tag:blogger.com,1999:blog-89015874576691736892024-02-01T22:18:59.984-06:00Fight 4 TylorCourage is being scared to death and saddling up anyway~John WayneFight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.comBlogger171125tag:blogger.com,1999:blog-8901587457669173689.post-36696457160680899042014-05-16T15:36:00.003-05:002014-05-16T15:36:35.945-05:005TH ANNUAL RYDE 4 TYLORIt has been a VERY long time since I have posted anything on this blog...with facebook and all I have kinda let this go but I am going to work really hard to keep this update this site and start posting on here again. It will be another great way to remember Tylor!!<br />
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So we have set the date for the 5th Annual Ryde 4 Tylor...it will be September 6th. Leaving Knickers in Dubuque. The rest of the stops are TBD. We will have Boys Night Out playing again when we get back along with 50/50's during the ryde and we are looking into doing another silent auction this year.<br />
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Please help pass the word and we hope to see you all there to help fight this horrible disease that took Tylor away from us too soon!!<br />
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<br />Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-61206017875277648592013-05-03T19:08:00.000-05:002013-05-03T19:08:18.520-05:00Not the Greatest News for the NPC CommunityWell today there was a conference called held by the NIH and NNPDF to update the community on the Cyclodextrin trial. The news was not what I was hoping for. They had to put the trial on a pause status due to an infection at the ommaya reservoir site in two patients and another (who is not in this trial) suffered from a brain bleed. The ommaya reservoir is like a port for a chemo patient but it is surgical placed in the front of the brain. The infection was cause by bacteria that sits on the skin that causes acne. At this time they are not sure if NPC patients are at a higher risk since this is a lipids disease or not. But they knew they couldn't continue with the trial with so many problems and not enough answers.<br />
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They put in on hold and got in contact with the FDA who in turn put an official hold on the trial and will send the NIH a letter stating what has to be done to get the trial off the hold status. The FDA was very pleased with the quick action by the team at the NIH for putting the trial on pause right away without first contacted them. The NIH will receiver the letter sometime next week and will inform the NPC community once they have a plan of action in place. <br />
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Dr. Porter did add that they did collect some promising results from the trial thus far. The bio-markers looked good and they got goo PK data. These results where from the patients receiving a very small dose of the cyclodextrin. Dr. Porter thought they would see nothing with this low of a dose, so that in itself is very hopeful!! <br />
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They do think that the infection was not drug related but device related. So he did go on to say that they will be looking at a lumbar injection as means to administer the drug. They do have concerns with how much of the drug will actually reach the brain but with the data collected from the trial he believes that they will be able to administer enough of the drug to reach the brain without causing toxicity. <br />
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There is a lot of work ahead for the NIH team but they are committed to get this trial back up and running as soon as they can. They could not give any kind of time line or dose levels at this time. I will keep everyone posted as information comes to me. Please say an extra prayer for the NPC community especially those in the trial that suffered an infection and the child who suffered a brain bleed. Thank you and God Bless!!Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-70730353620669166302013-03-12T21:59:00.000-05:002013-03-12T22:00:12.871-05:00A Much Needed UpdateTylor had his yearly check up at Mayo in February. Dr. Patterson is still very happy with his condition. His spine is still looking good, his horizontal gaze is getting a bit slower and of course his vertical gaze is very slow like before. He seems to be having more tremor issues than in the past but nothing to serious right now anyway. The seizures are still an issue but we are thinking that is do to some changes in his environment. So I am keeping a close eye on them and we will discuss at a later date if we need to adjust his medication. He was pretty sleepy during the exam but the doctor was happy with out Ty responded to the test he preformed.<br />
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His G-tube was also changed on our visit. She was very pleased with how good the site looks. No infection or granulation tissue to report. He is such a trooper when he gets it changed. With his growth (now 6'-0") the track is in a upward position so it is a bit uncomfortable to have changed. In time it may need to be repositioned. Meaning another surgery. <br />
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As far as his diet they are concerned that his weight is still the same as it was a year ago. So we increased his calorie count. He takes one can of the old formula and one can of a new formula with more calories twice a day. We don't want him to get to big for the simple reason that I still have to get him around but we also want to ensue that he is getting the amount of calories and nutrition his growing body needs.<br />
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Tylor also had reevaluation for PT, OT, and speech therapy. They will be working on respiratory therapy, endurance, fine motor, and the Dynavox (his communication device). I was given stretches to do at home and he needs to ride his bike more. Tonight he did pretty good with the stretches and as always loves riding his bike.<br />
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<br />Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-79894869212653664212013-02-28T22:11:00.001-06:002013-02-28T22:13:16.601-06:00Rare Disease Fight Song<div style="text-align: center;">
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<span style="font-size: large;"><span style="font-size: large;">Ra</span>lly students of<span style="font-size: large;"> <span style="font-size: large;">Notre Dame, </span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Fight rare disea<span style="font-size: large;">se<span style="font-size: large;">, and sound her fame</span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Raise her Gold and Blue, </span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">And cheer with voices<span style="font-size: large;"> true, </span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">In the fight again<span style="font-size: large;">st rare di<span style="font-size: large;">s<span style="font-size: large;">ease.</span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Fight rare disease in every <span style="font-size: large;">game</span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">St<span style="font-size: large;">rong of hea<span style="font-size: large;">rt and t<span style="font-size: large;">rue <span style="font-size: large;">to N<span style="font-size: large;">otre Dame.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">We will ne'er forget her</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">And <span style="font-size: large;">we'll cheer her ever,</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">In the fight again<span style="font-size: large;">st rare disea<span style="font-size: large;">se.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Chor<span style="font-size: large;">us<span style="font-size: large;">:</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Fight rare disease <span style="font-size: large;">at Old Notre <span style="font-size: large;">Dame</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">En<span style="font-size: large;">ding their neglect and cheering her name, </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Send the volley cheer on high, </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"> <span style="font-size: large;">Shake all seven <span style="font-size: large;">thousand down from the sky, </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">What though the odds be great <span style="font-size: large;">or small</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Old Notre Dame will win over<span style="font-size: large;"> all, </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">While her loyal students march</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">In the fight against r<span style="font-size: large;">are disea<span style="font-size: large;">se.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-8567609509928694122013-01-26T14:21:00.001-06:002013-01-26T14:24:20.097-06:00NPC Press Release on the Cyclodextrin Trial<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfUObUkRC8buLhmECrZJndYO2tintyRt0rxBfxzS5MNwJ1Je1YY5K1a5fcJV6xmNw7_6_MAEUNgfeFd-HsdpkFOfRncOvGv_0oSNmkDcl6I8jGpnDc1yE-0f-_HOZiXh3VxqO6ZcAMr2g/s1600/DSC07635.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfUObUkRC8buLhmECrZJndYO2tintyRt0rxBfxzS5MNwJ1Je1YY5K1a5fcJV6xmNw7_6_MAEUNgfeFd-HsdpkFOfRncOvGv_0oSNmkDcl6I8jGpnDc1yE-0f-_HOZiXh3VxqO6ZcAMr2g/s320/DSC07635.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tylor is happy to announce along with the NIH........Drum Roll Please</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<b><span style="font-family: Times New Roman; font-size: 15px;"><span style="font-family: Arial, Helvetica, sans-serif;">Dear Families and Friends,</span></span></b><br />
<b><span style="font-family: Times New Roman; font-size: 15px;"><span style="font-family: Arial, Helvetica, sans-serif;"> </span></span></b>
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The NNPDF central office received the following
press release from the National Institute of Health (NIH) NPC Clinic
from Dr. Forbes "Denny" Porter with an update on the Cyclodextrin Trial.
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<a href="http://www.nnpdf.org/documents/ASPA_0036_20130118_NIH_PR_Neurological_Treatment_Trial_APPROVEDFINAL.pdf">Click Here</a> to see the press release. </div>
Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-16206266547451683822013-01-12T15:30:00.000-06:002013-01-12T15:30:08.964-06:00NIH Clinic Trial is a GO!!!<div style="margin: 1em 0 3px 0;">
<a href="http://feedproxy.google.com/%7Er/nnpdf/%7E3/EHapzbqqeWM/update-fda-approves-nih-trnd-team-for.html?utm_source=feedburner&utm_medium=email" name="1" style="font-family: Arial, Helvetica, sans-serif; font-size: 18px;" target="_blank">UPDATE: FDA Approves NIH TRND Team for NPC Cyclodextrin Clinical Trial!</a>
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<span>Posted:</span> 11 Jan 2013 02:42 PM PST</div>
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<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 1.38;">Dear Families and Friends,</span><br /><br /><h5 class="uiStreamMessage userContentWrapper">
<span class="messageBody" style="color: #333333; font-size: 13px; line-height: 1.38;"><br />The
NNPDF central office received the following update from the National
Institute of Health (NIH) NPC Clinic from Dr. Forbes "Denny" Porter.<br /><br /><i>"We
were informed today that the FDA has removed the clinical hold on the
hydroxypropyl-β-cyclodextrin trial. We are planning to enroll the first
patient in two weeks. This trial is a major step in trying to determine
if this is a safe and biochemically effective drug for NPC. Our goal is
to use data from this trial to optimize the design of a larger second
trial focused on clinical efficacy. Thank you for your help and support!</i><span class="text_exposed_show" style="display: inline;"><i><br />The TRND Team"</i><br /><br />To follow updates and breaking news visit the <a href="http://www.nnpdf.org/cyclodextrin.html" target="_blank">Cyclodextrin page</a> on the <a href="http://www.nnpdf.org/" target="_blank">NNPDF web site</a>. </span></span></h5>
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Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-40625378832931521722012-12-06T19:43:00.001-06:002012-12-06T19:43:46.480-06:00More on the Cyclodextrin Trial
Below you will find the lastest on the Cyclodextrin Trial at the NIH. Unfortunately Tylor is not a candidate for this first trial because he is on more than one anti-seizure medication. We will be following this trial closely and we are hopeful that Tylor will be able to participate in the upcoming trial involving Cyclodextrin. <br />
<h2 style="text-align: center;">
<span style="color: #a64d79;"><span style="font-weight: normal;">~ November 28th, 2012 ~ </span></span></h2>
<h2 style="margin-top: 0px; text-align: center;">
<span style="color: #a64d79;"><span style="font-weight: normal;"> Cyclodextrin (HP-β-CD) for NPC1 Disease</span></span></h2>
<h2 style="text-align: center;">
<span style="color: #a64d79;"><span style="font-weight: normal;"> ~ Clinical Trial Strategy ~ </span></span></h2>
<div style="margin-bottom: 0; text-align: center;">
<b>UPDATE ~ November 28th, 2012 ~ UPDATE</b></div>
<div style="margin-bottom: 0; margin-top: 0; text-align: center;">
Therapeutics for Rare and Neglected Diseases (TRND)</div>
<div style="margin-top: 0; text-align: center;">
National Institutes of Health ~ Bethesda, MD </div>
<div style="margin-top: 0; text-align: center;">
<br /></div>
Dear National Niemann-Pick Disease Foundation Family Members,<br />
The latest release pertaining to the upcoming NIH NPC clinical trial has been made available to the NNPDF. <a href="http://www.nnpdf.org/documents/NIHHPBCDPhaseIAnnouncement112812.pdf">To view the NIH NPC Cyclodextrin Clinical Trial Flyer ~ dated: 11/28/12 ~ click here. </a><br />
This study titled: 2-hydroxypropyl-B-cyclodextrin
(HP-B-CD) in Niemann-Pick Disease, type C1, is in the process of being
reviewed by the FDA and the team of researchers and physicians
associated with the Therapeutics for Rare and Neglected Disease ~
Niemann-Pick Type C Disease Team (TRND NPC Team) at the NIH are
hopeful that they will be able to begin enrolling patients in January
of 2013.<br />
The National Niemann-Pick Disease Foundation is pleased
that we are able to forward this information along to our family
membership. The NIH attached flyer specifies that interested parties
should note your interest in possible trial participation by e-mailing
a representative at the NIH: nichdnpc1@mail.nih.gov<br />
<b><u>Please note:</u></b> If you do NOT have
access to the internet or an e-mail account please contact the NNPDF
Central Offices at the 920-563-0930 and we will assist you in reaching
the appropriate contact individual(s) at the NIH for more
information.<br />
<div style="margin-bottom: 0;">
This is indeed, a very exciting
time for all of our NNPDF family community and, more importantly, all
of our precious loved ones diagnosed with Niemann-Pick Disease Type C</div>
<div style="margin-bottom: 0; margin-top: 0;">
.</div>
<div class="style14" style="margin-top: 0; text-align: center;">
We WILL Persevere in our Quest for a Cure!</div>
<div style="margin-bottom: 0;">
Kind Regards, Nadine M. Hill</div>
<div style="margin-top: 0;">
Executive Director; National Niemann-Pick Disease Foundation</div>
For a historical timeline on the<a href="http://www.nnpdf.org/Cyclodextrin.html"> Cyclodextrin (HP-β-CD) for NPC1 Disease</a> <span style="color: #3300ff;"><b>Clinical Strategy</b></span> ~ outlined by the NNPDF ~ please follow the link above.Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-63806040556523916172012-12-06T19:32:00.000-06:002012-12-06T19:32:10.488-06:00What is Blue, Purple and Yellow???<b>Tylor's eye and cheek!!</b> <br />
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Tylor had a little accident last Thursday. He had a seizure and fell out of bed, right on the wood floor, face first. I decided to talk him to the ER to make sure that everything was okay since Tylor can't really communicate if he is in pain or something isn't right. <br />
<br />
They took his vitals and did some blood work to check med levels. The doctor also order an X-ray to be done. When he looked at the X-ray and saw no brake but there was fluid present which usually indicates a brake. So Tylor was then given a CT scan. Which did indeed show a few fractures to his right cheek bone. Of course there is nothing they can do for this but give some antibiotics to prevent infection and hope that is heals properly. <br />
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I am happy to report that the swelling and bruising has gotten much better. But he doesn't seem himself since the fall. Not sure if it has anything to do with the accident or not but I am watching him closely and hopefully he will start being himself again soon.<br />
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<br />Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-23831583344093233942012-11-26T21:51:00.000-06:002012-11-26T22:03:42.227-06:00Cyclodextrin Trial News<h4>
Latest Update on Planning for NIH's Clinical Trial of Cyclodextrin </h4>
<h2 align="center">
~ November 2012 ~ </h2>
<h1 style="margin-bottom: 0; text-align: center;">
<b>Cyclodextrin (HP-β-CD) for NPC1 Disease</b></h1>
<h1 style="margin-bottom: 0; margin-top: 0; text-align: center;">
~ Clinical Strategy ~ </h1>
<div style="margin-bottom: 0; margin-top: 0; text-align: center;">
<b>Nuria Carrillo, MD</b></div>
<div style="margin-bottom: 0; margin-top: 0; text-align: center;">
<b>Therapeutics for Rare and Neglected Diseases (TRND)</b></div>
<div style="margin-top: 0; text-align: center;">
<b>National Institutes of Health ~ Bethesda, MD </b></div>
<div style="margin-top: 0; text-align: center;">
<br /></div>
Please follow this<a href="http://www.nnpdf.org/documents/NORD_Nuria_2012PowerPoint111912FinalApproved.pdf"> link to view of PowerPoint</a> presentation titled:<br />
<b><a href="http://www.nnpdf.org/documents/NORD_Nuria_2012PowerPoint111912FinalApproved.pdf">Cyclodextrin (HP-β-CD) for NPC1 Disease</a></b> <a href="http://www.nnpdf.org/documents/NORD_Nuria_2012PowerPoint111912FinalApproved.pdf"><b>~ Clinical Strategy ~</b></a><br />
<b> </b> <br />
Created and presented by:<br />
<div style="margin-bottom: 0;">
<b>Nuria Carrillo, MD; Staff Clinician</b></div>
<div style="margin-bottom: 0; margin-top: 0;">
<span style="margin-bottom: 0; margin-top: 0; text-align: center;">Therapeutics for Rare and Neglected Diseases (TRND)</span></div>
<div style="margin-bottom: 0; margin-top: 0;">
Division of Preclinical Innovation</div>
<div style="margin-bottom: 0; margin-top: 0;">
National Center for Advancing Translational Sciences</div>
<div style="margin-bottom: 0; margin-top: 0;">
<span style="margin-bottom: 0; margin-top: 0; text-align: center;">National Institutes of Health ~ Bethesda, MD </span></div>
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Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-54214907446644735202012-10-29T22:14:00.002-05:002012-10-29T22:19:23.185-05:00Wow...It's been a long time......Well where do I start?? It has been a very long time since I have posted a blog for Ty and we have a lot to share.<br />
<br />
Tylor has been doing so well. He is doing great in school. He has more interactive with his peers this year. He participates more in class and stays awake more then ever during the day. He does like to watch the girls at lunch which complicates eating but at least he's enjoying himself...right?? When I put him on the bus and take him off he always has a smile on his face, which makes it much easier to send him to school. <br />
<br />
It was a very special Homecoming for Tylor. He was asked by his "girlfriend" Elena and of course I made it happen. His Uncle Mitch was nice enough to let him borrow some clothes that looked very handsome on him. He and Elena had a wonderful time with each other and they were both happy to see most of their friends there. It was so cute to see them holding hands most of the night.<br />
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<tr><td class="tr-caption" style="text-align: center;">Tylor and Mom at Homecoming.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Elena and Tylor's first picture of the night</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">What a cute couple!!!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Time to say Goodnight!!</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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Ty also celebrated his 16th birthday!!! We went out to eat at a local Mexican restaurant with some friends. He loves to eat there.. or it might be that his Mama loves their Margaritas. But at any rate we had a great time and Ty was full of smile the whole time and loves his Birthday dessert. <br />
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A few more updates Ty is still not going to PT or OT because he is going so well. His new AFO's are working out great and his strength is awesome!! We have been very blessed with Ty's condition and how slow it has been progressing. He is such a happy and loving kid...I couldn't ask for anything more in our situation.<br />
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I hope you all enjoy the pictures and I am hoping to post more often now that things have settled down a bit in our lives. Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-28278279654505079432012-09-09T21:05:00.001-05:002012-09-09T21:05:37.047-05:00NASHVILLEWhere did the summer go?? Tylor had a fun filled summer but it just went by way too fast. To end summer vacation we went to Nashville for the National Niemann Pick family conference. This year marks the 20th anniversary for the foundation so it was an extra special time for all of us involved especially for those who started this wonderful foundation. <br />
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It was a great weekend but a little overwhelming. There was a lot of information about the up coming Cyclodextrin trial at the NIH and some other great research going on in different labs around the country. They were hoping to get the trial up and going by the end of this year but it looks like it will start in the fall of 2013. I am not sure if Tylor would be eligible for the trial because they are not completely done talking with the FDA on all the specifics. But I am still up in the air about getting Tylor in the trial so as information emerges I will pass it on and let you all know what we have decided. <br />
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Outside of receiving all the great information we were able to spend some time with old friends and met a lot of new families. I always love getting together with my NPC family because they know what we are going through and they are so supportive.<br />
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Here are some pictures<br />
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<tr><td class="tr-caption" style="text-align: center;">Taking a nap after swimming</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Karen Quant introducing the doctors & researches involved with the NPC community</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The children that where taken from us too early last year</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ty at the Rain Forest Cafe</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Throwing money into the fountain. All the money was donated to NNPDF</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The Moms at Hooters!! Tylor got a shirt signed by all the girls there.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU0JDPVj226RLwmCt0gQQ9d6G_KqRglOgzDQOf0i45UUEvjmG8SGQ80j4j0sS1dOicOYUHi8gZR5lwj1QegNkIUrYzRXcQIU9GFkfj7z7VghQRJr4rqjsPUU2z1n9pqBSnbN_Z3HkHZic/s1600/DSC07422.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU0JDPVj226RLwmCt0gQQ9d6G_KqRglOgzDQOf0i45UUEvjmG8SGQ80j4j0sS1dOicOYUHi8gZR5lwj1QegNkIUrYzRXcQIU9GFkfj7z7VghQRJr4rqjsPUU2z1n9pqBSnbN_Z3HkHZic/s320/DSC07422.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We got to see some ND friends there as well.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNbk8ZBRJ2_Q0QXvhBLBE3nhdyVDpzL1LPWOEKlzl7SxOYKRMpHJ7yz9_t6xHVjkNgV1FUTw2oIK-3ODMKwiKAEFMmdbcQkfRUONfHRinPpzXscJP-vrklKsIiGuPCEbdDIbXz_0AkVeg/s1600/DSC07423.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNbk8ZBRJ2_Q0QXvhBLBE3nhdyVDpzL1LPWOEKlzl7SxOYKRMpHJ7yz9_t6xHVjkNgV1FUTw2oIK-3ODMKwiKAEFMmdbcQkfRUONfHRinPpzXscJP-vrklKsIiGuPCEbdDIbXz_0AkVeg/s320/DSC07423.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We had a western theme this year and the kids loved the cowboy hats</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhayuG8es8DREjYZyIG4W_5mw612o-aOeADdQMME3Db75SsqB6dntoBPksIz0oOqbpoaHh-cbCVz7FUqOrNNyaJ0m_-dw4dKeBLqNltPlJlq9-rh0UiJ0GBzy3mLyzpOnNaCF9cQiPC1sY/s1600/DSC07438.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhayuG8es8DREjYZyIG4W_5mw612o-aOeADdQMME3Db75SsqB6dntoBPksIz0oOqbpoaHh-cbCVz7FUqOrNNyaJ0m_-dw4dKeBLqNltPlJlq9-rh0UiJ0GBzy3mLyzpOnNaCF9cQiPC1sY/s320/DSC07438.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mom, Ty, and Kim dancing</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The Moms are getting down.</td></tr>
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<br />Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com1tag:blogger.com,1999:blog-8901587457669173689.post-71082960900029434832012-07-23T21:21:00.003-05:002012-07-23T23:10:05.202-05:003 Down and only 1 to go...It's so hard to believe that camp is coming to a close. He will go for his last weekend on Friday! We have met so many amazing people again this year that has made Ty's camp experience unforgettable. They love him so much out there. It is hard to leave. I actually was crying as I drove away on Sunday. It is so awesome to see him having so much fun and smiling the whole way home. This place is such a great organization for people with special needs. It has been a blessing to our family and we have made life long relationships with so many people. <br />
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Here are some pictures that were taken over the few weeks he was there. There is no denying he had a blast!!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4cydK8uV1jcvqBLYjrDj7VkJ4nzb58PUGSWgDUvIjij4CloWd848hmQr1TQ1do311PoVEq6wmBUDk3_6r5yBq6FKbtOhm1mmMgLhpaq3uK0ir_OItlZwz9900Pz0FVo1qvU4Yel44tes/s1600/17980024.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4cydK8uV1jcvqBLYjrDj7VkJ4nzb58PUGSWgDUvIjij4CloWd848hmQr1TQ1do311PoVEq6wmBUDk3_6r5yBq6FKbtOhm1mmMgLhpaq3uK0ir_OItlZwz9900Pz0FVo1qvU4Yel44tes/s320/17980024.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ty and Cassi</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgklm3m3Sxt7N4Vl868gMM70jnDh2QbvchJw8F5ten_zwMjBI0GRQON2wHkHiXZi9A4CuqmlETfg_O7eYBBp_1pdaL8hHvRQqXnNmY1pd_ldlnv3QnPn2Ht2rsebBIJdOHemMHzGe51Q1M/s1600/17980018.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgklm3m3Sxt7N4Vl868gMM70jnDh2QbvchJw8F5ten_zwMjBI0GRQON2wHkHiXZi9A4CuqmlETfg_O7eYBBp_1pdaL8hHvRQqXnNmY1pd_ldlnv3QnPn2Ht2rsebBIJdOHemMHzGe51Q1M/s320/17980018.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ty and Kristina</td></tr>
</tbody></table>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH6ZEk_9hQMKLhyphenhyphen2T1WyBd106R8bsgwaulqHehhRL07rpNT7D0Yy-oMAQrNTw8R__yipdK-IE-z9erVx0v9Bmtik72c7CqOvMjgDetwCJcgYvh_HoCIjPgb_17Wvb_BqmUPakHSrqhq_k/s1600/17980012.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH6ZEk_9hQMKLhyphenhyphen2T1WyBd106R8bsgwaulqHehhRL07rpNT7D0Yy-oMAQrNTw8R__yipdK-IE-z9erVx0v9Bmtik72c7CqOvMjgDetwCJcgYvh_HoCIjPgb_17Wvb_BqmUPakHSrqhq_k/s320/17980012.jpg" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgztnUZTMeJcoDlzNaBfchrMPMSHuCKJ7FL9BH4Ekq85YwYq7xe5YFPZZy02z_TtrE89KQdqjzC13UOJd7QeHyV5RJHI0a0hazrUHkO53EHEICJ4z2x0QwZd7kZBhpmEBAYpcRX5l-CaDU/s1600/17980007.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgztnUZTMeJcoDlzNaBfchrMPMSHuCKJ7FL9BH4Ekq85YwYq7xe5YFPZZy02z_TtrE89KQdqjzC13UOJd7QeHyV5RJHI0a0hazrUHkO53EHEICJ4z2x0QwZd7kZBhpmEBAYpcRX5l-CaDU/s320/17980007.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Got a little Cowboy in ya!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5txrp1wiryUck7s_5qfEO2ShZmoXMaunAA06vjDHoVOpDZVCTgr2O5WctIu7K-56-zPfRZOSSCLDizOXdXK4tYIBR2nD-_WwBgxvdcAengYYF1wdl4Jft8RhhIh6_E0jCncyJ0fYtNEk/s1600/17980004.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5txrp1wiryUck7s_5qfEO2ShZmoXMaunAA06vjDHoVOpDZVCTgr2O5WctIu7K-56-zPfRZOSSCLDizOXdXK4tYIBR2nD-_WwBgxvdcAengYYF1wdl4Jft8RhhIh6_E0jCncyJ0fYtNEk/s320/17980004.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Saddle up partner</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAOB3t_A58cIFYYbPNV3lqJ2u7AhEn83E6eLco6lU4NnjGPv5Xx6y92x3GDtNayrayqEzQNjSsnHfaHLqRNAhWC2kYgafm-B1nfKHEcuAMCRJTGX3TB6-OIfL7LKSmRWwIUzoKim8UmIU/s1600/17980001.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAOB3t_A58cIFYYbPNV3lqJ2u7AhEn83E6eLco6lU4NnjGPv5Xx6y92x3GDtNayrayqEzQNjSsnHfaHLqRNAhWC2kYgafm-B1nfKHEcuAMCRJTGX3TB6-OIfL7LKSmRWwIUzoKim8UmIU/s320/17980001.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A little water time with Cassi</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIW4jf2HsjlDmDNBZzpuSv9AqRjkq6FrewB6HvWiAoeWXeWGl1dqFSXGZYXFetTHmPDx9QFBjNHrRwR7GLXSl38tDgZuJUVpFz2JaSSRJ9xldaA_pSYFEfq2aWm5DYmqst1Y3eXYkZya8/s1600/17970026.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIW4jf2HsjlDmDNBZzpuSv9AqRjkq6FrewB6HvWiAoeWXeWGl1dqFSXGZYXFetTHmPDx9QFBjNHrRwR7GLXSl38tDgZuJUVpFz2JaSSRJ9xldaA_pSYFEfq2aWm5DYmqst1Y3eXYkZya8/s320/17970026.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ty loves blowing bubbles</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNBj2skkmKAMBzWPrEkgQD9qjNquGeNoGjfaVQ3LtqGHiA2FxACdmGSCgwdghnwpxDNNNwV-fKnoDBewsZOmosk12HAa8RXiVV6tDw9fsew6a5nvsvpWrb6sLxmb9KuA6MnLvbAAKl9qo/s1600/17970023.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNBj2skkmKAMBzWPrEkgQD9qjNquGeNoGjfaVQ3LtqGHiA2FxACdmGSCgwdghnwpxDNNNwV-fKnoDBewsZOmosk12HAa8RXiVV6tDw9fsew6a5nvsvpWrb6sLxmb9KuA6MnLvbAAKl9qo/s320/17970023.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dancing with the girls image that! You hotdog Ty</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ7xh88A4_fmh6uYRQ5aKSdwOnwhQFo8afpZzy1R85zR7I7jl2vWIjYtWJ41aYqLxiup9BY1AgPxpoujsHd6pkHr4OYyV-1MTyyTewpAkrp9-hG3XLr8reBnAnJyjszTfY-udtaWG7ZY4/s1600/17970021.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ7xh88A4_fmh6uYRQ5aKSdwOnwhQFo8afpZzy1R85zR7I7jl2vWIjYtWJ41aYqLxiup9BY1AgPxpoujsHd6pkHr4OYyV-1MTyyTewpAkrp9-hG3XLr8reBnAnJyjszTfY-udtaWG7ZY4/s320/17970021.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Check out his cool shades</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQdKZ1a-XsaQ-94FiVJIl5T_S0uHq81hWyv6lMFCeymjgbhHOuuOZYszjtxe38Ihvqo5nxy404gzW5lAlKr7D2UhHNyOOu8BEpRTDAhfHH4AQOhYPx9BvnA_RSFFfg3xP3gCvahKzou70/s1600/17970017.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQdKZ1a-XsaQ-94FiVJIl5T_S0uHq81hWyv6lMFCeymjgbhHOuuOZYszjtxe38Ihvqo5nxy404gzW5lAlKr7D2UhHNyOOu8BEpRTDAhfHH4AQOhYPx9BvnA_RSFFfg3xP3gCvahKzou70/s320/17970017.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Look closely at Kristina's face...it says I Love Tylor</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5OORrV4mm9wuDBVOx9EKq5JgXVRBx1NS_vP9SyxaIoTvqTIdAOJJfV6j1nN-9_XaM3avKCx7Ryo40mK22cfclSDQFH2tO347nBqoKFNY1BX0uZTR4VGZmcd10T0YOnodrneAL6M36Q8w/s1600/17970015.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5OORrV4mm9wuDBVOx9EKq5JgXVRBx1NS_vP9SyxaIoTvqTIdAOJJfV6j1nN-9_XaM3avKCx7Ryo40mK22cfclSDQFH2tO347nBqoKFNY1BX0uZTR4VGZmcd10T0YOnodrneAL6M36Q8w/s320/17970015.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Surrounded by girls again</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-qy0OXG1NlVNITSXWDA4VA9xhaIjti4tQ-81bA8fVw278hJIja8vAARj7dcA_flAB6kLQXGjJfx8mvN-4sn0ba70fG-GMuYsxnWvbr0PAX41qxdolcCnTTKdbJcjo-mJ_Eu2AvTXHf1E/s1600/17970011.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-qy0OXG1NlVNITSXWDA4VA9xhaIjti4tQ-81bA8fVw278hJIja8vAARj7dcA_flAB6kLQXGjJfx8mvN-4sn0ba70fG-GMuYsxnWvbr0PAX41qxdolcCnTTKdbJcjo-mJ_Eu2AvTXHf1E/s320/17970011.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Art and craft time</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSOMT4tCWj_Lyb7l_I75IYhqG3FAxFa7YYcnexvufhyphenhyphenKb789VJZInsLDUxr7zoz89CNNqVwtHOWwQvSFafUu13X8aPD-kk5nBfSGBxjWIfaT-Bp74D8wFuckJEWyNflhVY7yCJSK8Q8ts/s1600/17970008.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSOMT4tCWj_Lyb7l_I75IYhqG3FAxFa7YYcnexvufhyphenhyphenKb789VJZInsLDUxr7zoz89CNNqVwtHOWwQvSFafUu13X8aPD-kk5nBfSGBxjWIfaT-Bp74D8wFuckJEWyNflhVY7yCJSK8Q8ts/s320/17970008.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">His bear has to go with him too</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOaNDmXpc9wl3a92TBCLNcjK5n3jwC3b6xRWkcHCP3vsU4RgR8O-k8o_OGh7fmTbass0lmG70KN22O5RUyh2Y2HVGz_K2KvHXm7J_igcjumnor6nAskHlVk3L-4TPCAb8okDiB0BmCvmk/s1600/17970003.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOaNDmXpc9wl3a92TBCLNcjK5n3jwC3b6xRWkcHCP3vsU4RgR8O-k8o_OGh7fmTbass0lmG70KN22O5RUyh2Y2HVGz_K2KvHXm7J_igcjumnor6nAskHlVk3L-4TPCAb8okDiB0BmCvmk/s320/17970003.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Look at that smile</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFeBGdSlpUExG1cpmNSJHj7gl-SsYehZijNKOi4aODMOmE5bO-KB76OHg0mUJkdqaCeXIFY9jpEkEhmSyOUQUEL-TRDuvEf6URn-qW9mp4nxsmY5sQdA3tyHFGAo8YT0SLWm1wGfo4PpQ/s1600/17970001.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFeBGdSlpUExG1cpmNSJHj7gl-SsYehZijNKOi4aODMOmE5bO-KB76OHg0mUJkdqaCeXIFY9jpEkEhmSyOUQUEL-TRDuvEf6URn-qW9mp4nxsmY5sQdA3tyHFGAo8YT0SLWm1wGfo4PpQ/s320/17970001.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://pushamerica.org/pushcontent2.aspx?id=1330">Push American</a> guys. If you haven't heard about them. Check them out...they are doing some great work for special needs camps across America.</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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</div>Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com1tag:blogger.com,1999:blog-8901587457669173689.post-92166012591669075622012-07-20T13:45:00.002-05:002012-07-20T13:46:16.619-05:00Let's Ride...<div style="text-align: center;">
<span style="color: orange; font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span style="font-size: x-large;"><b>3rd ANNUAL RYDE 4 TYLOR</b></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTev0-G4pvJlatNZCChnUoDo3iKDmZfgJ0ZwYYjFqlhsCdhp2qhe5Oxh_9CUahnfpB6gD8ymeHfEziPI5aLKNEH6g64HY9o_ba9XI_anBPEXFci1rL9sUanEwLAzORdmNB28GH4FwmkN8/s1600/DSC03895.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTev0-G4pvJlatNZCChnUoDo3iKDmZfgJ0ZwYYjFqlhsCdhp2qhe5Oxh_9CUahnfpB6gD8ymeHfEziPI5aLKNEH6g64HY9o_ba9XI_anBPEXFci1rL9sUanEwLAzORdmNB28GH4FwmkN8/s320/DSC03895.JPG" width="320" /></a></div>
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<div style="text-align: center;">
<span style="font-size: large;">AUGUST 11th 2012</span></div>
<div style="text-align: center;">
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<div style="text-align: center;">
<span style="font-size: large;">SIGN UP AT KNICKER'S 10:30-NOON</span></div>
<div style="text-align: center;">
<span style="font-size: large;">$10 PER PERSON</span></div>
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<div style="text-align: center;">
<span style="font-size: large;">KICKSTANDS UP AT NOON SHARP!</span></div>
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<span style="font-size: large;"><span style="color: orange;">1st Stop - Buenie, IA "Hank's"</span></span></div>
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<span style="font-size: large;"><span style="color: orange;">2nd Stop - Guttenberg, IA "Damn Bar"</span></span></div>
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<span style="font-size: large;"><span style="color: orange;">3rd Stop - Petersberg, IA "The Detour"</span></span></div>
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<span style="font-size: large;"><span style="color: orange;">4th Stop - Farley, IA "Dirty Ernie's"</span></span></div>
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<span style="font-size: large;"><span style="color: orange;">Last Stop - Dubuque, IA "Knicker's"</span></span></div>
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<span style="font-size: large;"><span style="color: orange;"><span style="color: black;">There will be 50/50 Drawings through out the day.</span></span></span></div>
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<span style="font-size: large;"><span style="color: orange;"><span style="color: black;">Koozies and bracelets for sale</span></span></span></div>
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<span style="font-size: large;"><span style="color: orange;"><span style="color: black;">Dinner will be from 6:00 to 7:30 at Knicker's</span></span></span></div>
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<span style="font-size: large;"><span style="color: orange;"><span style="color: black;">$3 donation </span> </span></span></div>
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<span style="font-size: small;">Please come out and support the fight against Niemann Pick Type C!! Cars and trucks also welcome!! Please pass the word and we look forward to a great ride and raising awareness about this horrible disease!!</span></div>Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-92043327313673384692012-07-11T22:28:00.000-05:002012-07-11T22:28:49.698-05:00Here's to you Rich<div class="separator" style="clear: both; text-align: center;">
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Tylor received a very special package in the mail the other day from his favorite camp counselor last year, Rich. He sent him chocolate and some strawberry milk shake stuff (which Tylor loved!!). Along with the goodies was a letter and in it told Tylor to nag me to update his blog. I know I have been very bad lately about updating his blog...but the summer has just been so busy. So here goes....<br />
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I can honestly tell you that Tylor looks and is better than he has been in a while, not that he was horrible before but WOW he is doing fantastic! It is hard to believe that two of his three weeks of camp are already over. He has had so much fun, like every year. He has been fishing, dancing, swimming, flirting with girls, doing arts and crafts and playing games while at camp this year. Last week he won the Biggest Ladies Man award...can you believe that?? He will be off to camp again this Friday till next Friday. It is so weird not having him home. At the beginning it is nice to be able to run errands after work and not have to worry about time running short but after two days I want him home but I know this is so good for Ty. He loves spending time with his camp buddies and everyone out there loves him! I have been sending a camera with him so once I get the pictures I will post them.<br />
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On the not so fun side of things for Tylor is he got his new AFO's (ankle braces) on Monday. Boy was therapy on Tuesday a struggle. Because of my work schedule I can't take Ty to therapy so his nurse takes him. But she said he had to do a lot of walking. The new AFO's are designed to prevent his toes to drop when he walks, so there is less mobility. The therapist had to try a couple of different "stops" to see which one works best for him now. This required a lot of walking with the different levels of stops. She did decide on a lower stop to give him more mobility but as his toe drop gets worse the level will need to be increased. Needless to say he was pretty tired after his session. <br />
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After this week of camp he has one more weekend and then the rest of the summer will be filled with family camping, Ryde 4 Tylor (August 11), a trip to Nashville, and maybe some relaxing in between all of that!! Then he starts school on August 21st....which is so crazy to me! I feel like he just got out of school and now he is going to be a Sophomore!! <br />
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I hope all his readers are enjoying their summer as much as we are...Thank you for your love and support!!<br />
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<br />Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com1tag:blogger.com,1999:blog-8901587457669173689.post-45164134335477519742012-06-25T20:08:00.001-05:002012-06-25T20:10:02.858-05:00Tylor's Hero was in Dubuque!!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkYtHZKLdweG7EG1wUkl93ohytPGqNO5p7TqJmbIfHjiTj8aB9u8F1MfB0hnD_jfByNIRe-zz9LTadmF7Z-LAHxEBIc-p7icAZ96ScgGbjMonDTleOO36r-p7qDXSDl5_MxXqiJxY-E1o/s1600/DSC07299.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkYtHZKLdweG7EG1wUkl93ohytPGqNO5p7TqJmbIfHjiTj8aB9u8F1MfB0hnD_jfByNIRe-zz9LTadmF7Z-LAHxEBIc-p7icAZ96ScgGbjMonDTleOO36r-p7qDXSDl5_MxXqiJxY-E1o/s400/DSC07299.JPG" width="400" /></a></div>
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Tonight I got a call from Ty's friend, Sam, to tell us that BRETT FAVRE was in Dubuque this afternoon. Brett gets his golf carts/four wheelers through Harris Golf Carts and the owner is good friends with Bubbs (the owner of the Dog House). Bubbs health is not well so he paid him a special visit. It is awesome how Brett keeps giving!! I wish we could have seen him again...Tylor cried when he found out that he didn't to see his friend.<br />
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Bubbs donated some items to Tylor's benefit and was very kind to give us a picture of him and Brett at Brett's home. Please pray for him and his family!! Thank you Bubbs for your generosity. <br />
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A little side note...What is even crazier that Brett was in town is that we were in Cadott at Country Fest this weekend and saw someone with a Falcon Favre jersey on. I have been trying to find one for a couple of years for Ty so he would have all four jerseys from him but I have not had any luck. This young man was the owners son and after talking to them about Tylor and his story he gave us the jersey!!! How awesome his that?? So now Ty has the complete collection!Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-90617398535916546992012-06-13T21:20:00.002-05:002012-06-13T21:22:42.419-05:00Website and CampI am not sure if some of you still go to Ty's website...fightingnpc4tylor.com but I am having some problems with it and since I do most of the updates on his blog I have decided to shut down the website and do everything on the blog. I am working on adding pages with the information from the website. It has been a slow process but I will get there. Please pass the word so people still know that the blog is still up and running!!<br />
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Well Sunday Ty goes to camp for the first time this summer for a week! He is so exciting to see his friends and is hoping that Jason will be there. His friend that is another die hard Cubs fan! The only sad part is that his favorite counselor, Rich, could not make it back this year. We will miss him dearly but I am sure Ty will have other counselors that love him as much as Rich does!<br />
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Here are some pictures from the past couple of weeks...thought you might enjoy them.<br />
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<tr><td class="tr-caption" style="text-align: center;">Tylor and Blake racing</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">S'more please</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Glow gun fight</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4ryJCbfvix_x-Vxiyp8C0fJM921ZHklwbEEgqhX5pFHv8JcoN4lPdfz8J6x_O7IHdQr4Sa6F8ZUHxOzOUb7ksBgg_j9imyCBVoBZn-3btsLvBOfpRZxdq9QmdTWYMBlBDgnNndHEEYZg/s1600/DSC07197.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4ryJCbfvix_x-Vxiyp8C0fJM921ZHklwbEEgqhX5pFHv8JcoN4lPdfz8J6x_O7IHdQr4Sa6F8ZUHxOzOUb7ksBgg_j9imyCBVoBZn-3btsLvBOfpRZxdq9QmdTWYMBlBDgnNndHEEYZg/s320/DSC07197.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Resting after a long weekend of camping</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOS1Ly4PuUWXPxb6kX624NjV0AwsoVFP0dQDfNN-qyhL3LO8EIMO9HOFgO-7DO3w1RBsf5wzTI3J3agYA8mQpI6FxwwYEjdxD3NolsLKfziIGe7E2Pv-gHolplmGTWvqsTbU9O3-C8Oj4/s1600/DSC07203.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOS1Ly4PuUWXPxb6kX624NjV0AwsoVFP0dQDfNN-qyhL3LO8EIMO9HOFgO-7DO3w1RBsf5wzTI3J3agYA8mQpI6FxwwYEjdxD3NolsLKfziIGe7E2Pv-gHolplmGTWvqsTbU9O3-C8Oj4/s320/DSC07203.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Open wide</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC2Zs49o4ze7HFXrQPj9qmbjVZHQ4jarUQwG_COgA0NxjMHHXdu6VvjHCjF1ixwrhtFyWgjToqWdlo8fuuwdmDimfTzxN4NoWvawjJ3Uuz_w4RdV86XrN8Q76opEude_q8x3pOGae7NRg/s1600/DSC07209.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC2Zs49o4ze7HFXrQPj9qmbjVZHQ4jarUQwG_COgA0NxjMHHXdu6VvjHCjF1ixwrhtFyWgjToqWdlo8fuuwdmDimfTzxN4NoWvawjJ3Uuz_w4RdV86XrN8Q76opEude_q8x3pOGae7NRg/s320/DSC07209.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Everything looks good...way to go Ty</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Playing a little baseball</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5SIQ-1mMnurenQFliKzqMVp3NGR0Iq9RO8z9ugwl2yRY1HoeuyOvu_SZ5DJdw4llyhrwF23Eq4wZ4cz_csVP-HnGC8QQa3ZI7PFop6ER9eddE5OjoqOGkV2zsTtRjEXvGc0hJIuuES-4/s1600/DSC07229.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5SIQ-1mMnurenQFliKzqMVp3NGR0Iq9RO8z9ugwl2yRY1HoeuyOvu_SZ5DJdw4llyhrwF23Eq4wZ4cz_csVP-HnGC8QQa3ZI7PFop6ER9eddE5OjoqOGkV2zsTtRjEXvGc0hJIuuES-4/s320/DSC07229.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ty and Josie catching some zzzz's</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ty and Justin taking a ride</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHK2Bef5eMJBhfgzPs5lHm_-wo_1G7AwJJ_W6WtQQNChgnL3xo2wjp6srwGb4ZxvVev2E_0MrtWrzpI1jCKxHbGvSsZlNJtX1XbKL5yFyyg_s3pQV1s1vAS0l5LhoFEfFXFKl9lP8PSfg/s1600/DSC07236.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHK2Bef5eMJBhfgzPs5lHm_-wo_1G7AwJJ_W6WtQQNChgnL3xo2wjp6srwGb4ZxvVev2E_0MrtWrzpI1jCKxHbGvSsZlNJtX1XbKL5yFyyg_s3pQV1s1vAS0l5LhoFEfFXFKl9lP8PSfg/s320/DSC07236.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Justin and Ty loved every minute of it</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUonLqrq2hPJXWRj1P6mlwfSrZmxIXbJQa5Np1_UMBOUwu5jiBHI2ZyFZZvVOm7V9NHLBsOnReRedSt-pcouOT0aQKtDcDtl4cccjl6Lej1X7yzda9y2EngJoLTTIabxyOVrfNUcNK9nw/s1600/DSC07239.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUonLqrq2hPJXWRj1P6mlwfSrZmxIXbJQa5Np1_UMBOUwu5jiBHI2ZyFZZvVOm7V9NHLBsOnReRedSt-pcouOT0aQKtDcDtl4cccjl6Lej1X7yzda9y2EngJoLTTIabxyOVrfNUcNK9nw/s320/DSC07239.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mom and Ty at the White's party</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSHTthCa1YKWDV2bKTNiHTiM4nEEXpXqNfr4z7rbUSztelkA3M-NZd0AGRVST5WdQccq8rwJGvV1yhLimTI5BqZU3EqjmpOmSHs-_ztKw3UQQXA3-In7ORv7o3ZILUvIYn3jpCVqI7O-U/s1600/DSC07242.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSHTthCa1YKWDV2bKTNiHTiM4nEEXpXqNfr4z7rbUSztelkA3M-NZd0AGRVST5WdQccq8rwJGvV1yhLimTI5BqZU3EqjmpOmSHs-_ztKw3UQQXA3-In7ORv7o3ZILUvIYn3jpCVqI7O-U/s320/DSC07242.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ty and Jason</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB9v8NHcBumH09ec9QX1sT19HRxUfUEeHVlp9WoUXjzPJCGzGdnzeKabvAxn6Ea0IkhnDcSJrXBzFRiisIf0QlVJDUCmuozJZVsvbk5pz4brDYfYE21ARt5qXqsz5XmZA5uknsMmgoQsg/s1600/DSC07243.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB9v8NHcBumH09ec9QX1sT19HRxUfUEeHVlp9WoUXjzPJCGzGdnzeKabvAxn6Ea0IkhnDcSJrXBzFRiisIf0QlVJDUCmuozJZVsvbk5pz4brDYfYE21ARt5qXqsz5XmZA5uknsMmgoQsg/s320/DSC07243.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ty taking Sy for a ride</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiL-ugqEUP9MzPSHAshrs_wOVwNBSlHDr8Kv13LxZwD3Ju2ZFmEuVgwqe4TaPdHIFVy-6TNCol3XMX8iWKXdzSNAlNNa63br-ay7VVfkS48Q1SVqmVEr3jPEOmWp7V6D9FQcVot9FU1Yug/s1600/DSC07250.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiL-ugqEUP9MzPSHAshrs_wOVwNBSlHDr8Kv13LxZwD3Ju2ZFmEuVgwqe4TaPdHIFVy-6TNCol3XMX8iWKXdzSNAlNNa63br-ay7VVfkS48Q1SVqmVEr3jPEOmWp7V6D9FQcVot9FU1Yug/s320/DSC07250.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Justin taking Tylor back to the camper for me to get ready for bed</td></tr>
</tbody></table>Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-42563388983078774632012-06-13T20:35:00.003-05:002012-06-13T20:36:45.575-05:00Ty Bug's Duck...The Lady Bug<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU2NPreW52K-koa_9Pk_t4NFa4k7zCUgG1bIwy1hH1-5WE9GhMxPtGNCDWAixAZdVdl2cDsxWyyn-E3qmrobDu4fMO9qaG2kolvPQ5_RwxgRlXl_FJf_a36xTQHDhXMIPiFoImnhF2ilQ/s1600/lady+bug.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU2NPreW52K-koa_9Pk_t4NFa4k7zCUgG1bIwy1hH1-5WE9GhMxPtGNCDWAixAZdVdl2cDsxWyyn-E3qmrobDu4fMO9qaG2kolvPQ5_RwxgRlXl_FJf_a36xTQHDhXMIPiFoImnhF2ilQ/s320/lady+bug.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ty's Duck is the lead!!</td></tr>
</tbody></table>
<br />
Well we didn't win the Grand Prize but Ty's lady bug duck won the first heat so at least we got into the final race! It sounded like they had amazing turn out and everyone had a great time! Thank you everyone who supported the Ducks for Bucks event to help find a cure for Niemann Pick Type C.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidlwUL2wnLzoQw65FgfLm4G5BPxde6cJyH9kHoRTXGJIdUtyqCXDC1jEEm8ub71vVGwnabHsILnibapr9hfiwPfGvtAbL_9ettOz_5jAs4TUX7h3tDExFXQ5-XaIKWGCYzko_uMSiOxn8/s1600/winner.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidlwUL2wnLzoQw65FgfLm4G5BPxde6cJyH9kHoRTXGJIdUtyqCXDC1jEEm8ub71vVGwnabHsILnibapr9hfiwPfGvtAbL_9ettOz_5jAs4TUX7h3tDExFXQ5-XaIKWGCYzko_uMSiOxn8/s320/winner.jpg" width="320" /></a></div>
<br />Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com1tag:blogger.com,1999:blog-8901587457669173689.post-90436624217933600832012-05-30T16:32:00.001-05:002012-05-30T16:44:06.693-05:00Ducks for Bucks June 2nd....Get Your Duck<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixwyr9aBs_n2yuH9TaDAAMejZx8MbxBCMoxChG0hCrqagmPG-_yk66U88oD-dpDG8F97z7Alc3EKc4GFqaQRjtipb2HpfTlyH2fF6J5_KIMw16rLICVL7vYS44J3mHkcYnoE-rbxIgFBU/s1600/13053264794492115065842.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixwyr9aBs_n2yuH9TaDAAMejZx8MbxBCMoxChG0hCrqagmPG-_yk66U88oD-dpDG8F97z7Alc3EKc4GFqaQRjtipb2HpfTlyH2fF6J5_KIMw16rLICVL7vYS44J3mHkcYnoE-rbxIgFBU/s1600/13053264794492115065842.jpeg" /></a></div>
<br />
The video of this poem is a must watch....The poem written by my aunt Donna Maser in honor of our Daughter Breann Chavez. It captured the emotional struggle that my husband and I went through after our daughter was diagnosed with Niemann-Pick Disease. It is dedicated to all families who are still in this fight. Sadly Breann passed away in June of 2006 at the age of 3. <br />
<br />
Jami and Lisa, parents of Breann, started a duck race to raise money for NPC in Memory of Breann. The race is June 2nd 2012 so there is not much time to get your DUCK!! You don't have to be present to win. The ducks are $5 ($1000 prize) or you can just make a donation!!<br />
<br />
Tylor bought a bug duck (pictured at the top), since we call him Ty Bug. They have all different kinds of ducks...check it out at <a href="http://www.ducksforbucks.org/">Bucks for Ducks</a> and get your DUCK!!!!<br />
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<br />
<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/UW0pk77SSg4?fs=1" width="459"></iframe>Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-33626767996355077672012-05-30T16:14:00.003-05:002012-05-30T16:16:31.197-05:00Road to Discovery, Dean Greg Crawford's Blog<div class="entrybody">
We had the pleasure of meeting Greg Crawford, the Dean of Science at Notre Dame. He is an awesome man doing a great thing for the NNPDF community. For the last two years he has biked all over America to raise awareness for NPC and this year he is biking from Boston, MA to Pebble Beach, CA. He left May 21 and plans on arriving in Pebble Beach June 22....amazing huh? He will be arriving in time for the Ara Parseghian, a form ND football coach who lost three grandchildren from this disease, golf tournament to raise money for NPC.<br />
<br />
He has been blogging about his journey and I thought some of you might what to take a look!!<br />
<br />
<a href="http://blogs.nd.edu/gregcrawford/blog/"> ROAD TO DISCOVERY</a><br />
<br />
<h3 class="entrytitle" id="post-1803">
<a href="http://blogs.nd.edu/gregcrawford/2012/05/29/day-9-holiday-city-oh-to-notre-dame/" rel="bookmark">Day 9: Holiday City, OH, to Notre Dame!</a> </h3>
<h3 class="entrytitle" id="post-1803">
Today was a terrific day for riding and reaching home for a
visit. Peter, a math professor from Notre Dame, and Tom, a friend from
Knollwood Country Club, joined us on the sunny, breezy ride from
northwestern Ohio.</h3>
<a href="http://blogs.nd.edu/gregcrawford/files/2012/05/7301555726_9aeddb9ebb.jpg"><img alt="" class="alignnone size-medium wp-image-1805" height="199" src="http://blogs.nd.edu/gregcrawford/files/2012/05/7301555726_9aeddb9ebb-300x199.jpg" width="300" /></a><br />
<b><a class="more-link" href="http://blogs.nd.edu/gregcrawford/2012/05/29/day-9-holiday-city-oh-to-notre-dame/#more-1803">Read more »</a></b><br />
<br />
<br />
<br />
<u><span style="font-size: large;"><b>The Ride Schedule</b></span></u><br />
<br />
<table class="table" id="sched"><thead>
<tr><th>Date</th>
<th>Arriving</th>
</tr>
</thead>
<tbody>
<tr>
<td>5/21/2012 </td>
<td>From Boston, MA to Sturbridge, MA (75 miles)</td>
</tr>
<tr>
<td>5/22/2012</td>
<td>Lakeville, CT (100 miles)</td>
</tr>
<tr>
<td>5/23/2012</td>
<td>Walton, NY (130 miles)</td>
</tr>
<tr>
<td>5/24/2012</td>
<td>Corning, NY (125 miles)</td>
</tr>
<tr>
<td>5/25/2012</td>
<td>Salamanca NY (105 miles)</td>
</tr>
<tr>
<td>5/26/2012</td>
<td>Meadville, PA (100 miles)</td>
</tr>
<tr>
<td>5/27/2012</td>
<td>Elyra, OH (100 miles)</td>
</tr>
<tr>
<td>5/28/2012</td>
<td>Bowling Green, OH/Montpelier, OH (100 miles)</td>
</tr>
<tr>
<td>5/29/2012</td>
<td>Granger, IN (95 miles)</td>
</tr>
<tr>
<td>5/30/2012</td>
<td>Matteson, IL (100 miles)</td>
</tr>
<tr>
<td>5/31/2012</td>
<td>Mendota, IL (100 miles)</td>
</tr>
<tr>
<td>6/1/2012</td>
<td>Davenport, IA (85 miles)</td>
</tr>
<tr>
<td>6/2/2012</td>
<td>Oscaloosa, IA (125 miles)</td>
</tr>
<tr>
<td>6/3/2012</td>
<td>Creston, IA (110 miles)</td>
</tr>
<tr>
<td>6/4/2012</td>
<td>Bellevue, NE (96 miles)</td>
</tr>
<tr>
<td>6/5/2012</td>
<td>York, NE (110 miles)</td>
</tr>
<tr>
<td>6/6/2012</td>
<td>Holdredge, NE (120 miles)</td>
</tr>
<tr>
<td>6/7/2012</td>
<td>McCook, NE (80 miles)</td>
</tr>
<tr>
<td>6/8/2012</td>
<td>Yuma, CO (100 miles)</td>
</tr>
<tr>
<td>6/9/2012</td>
<td>Byers, CO/Denver,CO (100 miles)</td>
</tr>
<tr>
<td>6/10/2012</td>
<td>Denver, CO – ND Club Tour</td>
</tr>
<tr>
<td>6/11/2012</td>
<td>Granby, CO (95 miles)</td>
</tr>
<tr>
<td>6/12/2012</td>
<td>Craig, CO (120 miles)</td>
</tr>
<tr>
<td>6/13/2012</td>
<td>Rangely, CO (90 miles)</td>
</tr>
<tr>
<td>6/14/2012</td>
<td>Altamont, UT (95 miles)</td>
</tr>
<tr>
<td>6/15/2012</td>
<td>Park City, UT (90 miles)</td>
</tr>
<tr>
<td>6/16/2012</td>
<td>Wendover, NV (160 miles)</td>
</tr>
<tr>
<td>6/17/2012</td>
<td>Ely, NV (120 miles)</td>
</tr>
<tr>
<td>6/18/2012</td>
<td>Fallon, NV (100 miles)</td>
</tr>
<tr>
<td>6/19/2012</td>
<td>South Lake Tahoe, NV (100 miles)</td>
</tr>
<tr>
<td>6/20/2012</td>
<td>Elk Grove, CA (100 miles)</td>
</tr>
<tr>
<td>6/21/2012</td>
<td>Livermore, CA (100 miles)</td>
</tr>
<tr>
<td>6/22/2012</td>
<td>Monterey/Pebble Beach CA (100 miles)</td></tr>
</tbody></table>
<br /></div>Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-34047910989124132142012-05-20T16:11:00.000-05:002012-05-20T16:11:05.220-05:00Therapy UpdateWell Tylor finally went back to physical therapy around the first part of April...he was off since December. The reason for the break was that he was meeting all his goals and we couldn't come up with any that were appropriate for him. So Jaime thought it would be best to discontinue therapy for a bit and in the spring come back for a revaluation. <br />
<br />
During the revaluation she noticed only slight decline but it definitely warranted a return to PT once a week. There was some more toe dragging while walking and posture concerns. She had me set up an appointment to get him fitted for new AFOs. His AFOs now are over a year old and he had out grown them. The new AFOs will have more limitations on how he can move his ankle so he won't be able to drag his toe as much.<br />
<br />
He was also seen by the wheelchair rep. He is also growing out of his wheelchair so he will need new parts for that as well. He will keep the same base but he will get new arm rests because he is using them more and we don't want him to get sores on his arms. He will also be getting a different lap belt but instead of a belt it will be a bar. This way he can't take it off and his position will be the same every time he is in the chair. There are so many people taking Ty in and out of his wheelchair that there is no consistency on the correct position he should be in. He sit will be moved out to compensate for his leg growth and the chair will be raised up an inch from the base for better clearance. He will also add foot straps because he tends to stick his feet out and we don't want his foot to get hurt going through doorways or in and out of the van.<br />
<br />
It has been a bit of a struggle for him to get back into a routine with physical therapy but he does a little better every week. And as for OT he is doing so good that we have gone down to once every other week.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg33fvWmfVx1KQZZM6m4tXqkQXGcRHKwja-z1ztaiUjeJxYJ7W795L0_lVz3OmBMU4M47GCHeKXkvm8awtLV1zPcc8LrlBZ77TZ5uXT-NMTmeC3vbYBqUZM87Eakm24qAy659c1nxZvnDE/s1600/DSC07070.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg33fvWmfVx1KQZZM6m4tXqkQXGcRHKwja-z1ztaiUjeJxYJ7W795L0_lVz3OmBMU4M47GCHeKXkvm8awtLV1zPcc8LrlBZ77TZ5uXT-NMTmeC3vbYBqUZM87Eakm24qAy659c1nxZvnDE/s320/DSC07070.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Reach Ty reach</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqeD_evMHYOUKNP9fn14gBXJ9IC0iufzx4WNGgFBggwrrp7b-MdoEAE-5_xnM_SDupRzyl6KN0fHWJ9xqTqRcQNjsQ46U4EP8iXza8sLC1QR3qMMHTcdN9cF1lzniahNult8XyGHUYaj0/s1600/DSC07072.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqeD_evMHYOUKNP9fn14gBXJ9IC0iufzx4WNGgFBggwrrp7b-MdoEAE-5_xnM_SDupRzyl6KN0fHWJ9xqTqRcQNjsQ46U4EP8iXza8sLC1QR3qMMHTcdN9cF1lzniahNult8XyGHUYaj0/s320/DSC07072.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Getting ready to cast the new AFOs</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBkRLqkz2Wf_Cug-8qZtvpKLN4YUjWzQ106V2pnTSnFMshLpW-xs8YmNj9ejvG1T9vT8ogwVV_G60Ita73dASTawEI4Ebo-NIav_8pBymxoUfwCU3YLPjxnXsLI7U2lFQfDm-BQ1o-DNs/s1600/DSC07081.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBkRLqkz2Wf_Cug-8qZtvpKLN4YUjWzQ106V2pnTSnFMshLpW-xs8YmNj9ejvG1T9vT8ogwVV_G60Ita73dASTawEI4Ebo-NIav_8pBymxoUfwCU3YLPjxnXsLI7U2lFQfDm-BQ1o-DNs/s320/DSC07081.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cutting open the first one</td></tr>
</tbody></table>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8t77Bx8EaRYd6HtElS171jRG7Px2-ELPeTzexDz2_qB_ma6ZeLyhm3pJKOEa1JirGO_T7T_tscBKn6vDCBGKwqqMx7ahKt9Dr4tPgJGe8PjM1ZWewYP7hfFzoTAIMCCPL0PU5Ac8_cGg/s1600/DSC07086.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8t77Bx8EaRYd6HtElS171jRG7Px2-ELPeTzexDz2_qB_ma6ZeLyhm3pJKOEa1JirGO_T7T_tscBKn6vDCBGKwqqMx7ahKt9Dr4tPgJGe8PjM1ZWewYP7hfFzoTAIMCCPL0PU5Ac8_cGg/s320/DSC07086.JPG" width="320" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">Look how skinning his leg is...</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Doing therapy at home...</td></tr>
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<br />Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-28104727277938426282012-05-20T15:41:00.001-05:002012-05-20T15:41:39.910-05:00We are so ready for school to be out!!Tylor is so ready for summer vacation along with myself...yes I am ready too!! We have a full summer planned which involves a lot of camping, swimming, camp at Camp Albrecht Acres, a vacation to Nashville and some therapy in between. Gotta keep the little (I mean Big) guy strong for the summer.<br />
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But who said we had to wait for school to be out to officially start the camping season!! We have been out twice and were suppose to go this weekend but Sy had to work. And of course we will be ready for the three day Memorial weekend coming up!<br />
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In past years Tylor would end up in the camper when it was buggy out...he hates bugs flying around but hey who doesn't? So this year I came up with a plan...we have a blow up couch for him to lay on and I bought a bug net that fits over the couch. It is a slick setup and Tylor loves it. This way he can enjoy the fresh air all day. <br />
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Last weekend when we camped we took Blake and Tylor fishing and guess what we caught.....a dog No not a dog fish a real dog and of course it was our dog, Josie. When Ty was reeling in his line Josie went after the worm and got hooked on her bottom lip. I was so freaked out that Tracy, my friend, had to get it out. <br />
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It was a great relaxing weekend for all of us. We are looking forward to many more this summer. Enjoy the pictures! <br />
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<tr><td class="tr-caption" style="text-align: center;">Sleeping in Saturday morning</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">A tree frog camped out on our electrical box</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Blake playing with our spare tire that blow out.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ty's bug net...wait can you see the big bug in there??</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Blake showing Tylor our worms for fishing</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">He loves to reel the line back in.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ty was eating cheese balls...look at the drool coming from Josie's mouth.</td></tr>
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<br />Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-75260368257100967862012-05-20T15:13:00.000-05:002012-05-20T15:13:17.476-05:00Special Olympics Challenge Day<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">The Hills and Dales group was the largest group there.</td></tr>
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Special Olympics Challenge Day was help at the Loras College wellness center. This was Tylor's four year of participating in this all day event. There are some many challenges for the athletes to compete in like dice bowling, bean bag toss, soccer, basketball, volleyball, ramp bowling, hitting a baseball, and many more. They also serve lunch for everyone and it is one of Ty's favorites Mac n Cheese, cookies, and pudding!<br />
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Sy was his volunteer this year so I could take pictures. We all had a great time and Tylor got to see friends from last year and even some from Hempstead.<br />
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<tr><td class="tr-caption" style="text-align: center;">Ty and Sy warming up to YMCA</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6ZGVgubjEVz1i7kPGuZHzD9G5sZzM57pcY8egfkCixokPuYl0sLvNcoSI_Rm1rRNpmuYcMnjSZuNA-6LfwN7KTA5TKQhGtUN-q0MVUxqwhMk8MmrsyJs8tR-ZQCE-DJJV2OwlYxU4m9k/s1600/DSC07002.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6ZGVgubjEVz1i7kPGuZHzD9G5sZzM57pcY8egfkCixokPuYl0sLvNcoSI_Rm1rRNpmuYcMnjSZuNA-6LfwN7KTA5TKQhGtUN-q0MVUxqwhMk8MmrsyJs8tR-ZQCE-DJJV2OwlYxU4m9k/s320/DSC07002.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Look at him kick that ball!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Tylor's door hanging he did a great job making it.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOxRicQaNYRd2Dc02nG0WFDueHp2cL5yG7RjCBu6QTxLOcassN1vR9PDlre5HtN8REZL-B3Lk98pNz1gzYi5LNy9rXbCWpXniAHw2X4XFhMUwlqenfUGnZ_lg0p_Yy-9_6hXYQEcJZ72o/s1600/DSC07025.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOxRicQaNYRd2Dc02nG0WFDueHp2cL5yG7RjCBu6QTxLOcassN1vR9PDlre5HtN8REZL-B3Lk98pNz1gzYi5LNy9rXbCWpXniAHw2X4XFhMUwlqenfUGnZ_lg0p_Yy-9_6hXYQEcJZ72o/s320/DSC07025.JPG" width="320" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">My little Devil</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I got it!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">He worked so hard it was time for some Z's</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7GDh0Cu44LJ-xAlmDxKgFRrP3OJIebtPrKl0q6XUbatVJ88T8VtFTHCxyVKoZJXlKBkTDWcRTHU98DYVY5Ig83zBFUa-9AuyyzSbXAbcWcSOxnRaGlU-ojwgpg6-sCh1MrSW37zBgDvc/s1600/DSC07056.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7GDh0Cu44LJ-xAlmDxKgFRrP3OJIebtPrKl0q6XUbatVJ88T8VtFTHCxyVKoZJXlKBkTDWcRTHU98DYVY5Ig83zBFUa-9AuyyzSbXAbcWcSOxnRaGlU-ojwgpg6-sCh1MrSW37zBgDvc/s320/DSC07056.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He received 5 ribbons that day....Way to Go Tylor</td></tr>
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<br />Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-22476228110597114222012-04-30T21:09:00.000-05:002012-04-30T21:11:35.299-05:00Our Notre Dame Trip<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCSbik1Oz-n__vckffofoItgO7NmdHNg3x4NNGAz9LIJo3pdjMpez3cle9RIxw296RrionLZ8SCFKHQrb71AV43hkhH2T6RQeTRkZJAM0z8i6ssSPO1_78VD4upnxDtOVM0zm-9LpSxNY/s1600/DSC06765.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCSbik1Oz-n__vckffofoItgO7NmdHNg3x4NNGAz9LIJo3pdjMpez3cle9RIxw296RrionLZ8SCFKHQrb71AV43hkhH2T6RQeTRkZJAM0z8i6ssSPO1_78VD4upnxDtOVM0zm-9LpSxNY/s320/DSC06765.JPG" width="320" /></a></div>
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Our trip to Notre Dame was a very rewarding experience. On Friday, March 23 we had lunch with the <a href="http://www.rarehealthexchange.org/index.html">Rare Health Exchange</a> students. I was amazed with how interested they were in Tylor and NPC. I figured it would be Ty, Sy and I at a table by ourselves but that definitely wasn't the case. The students were very excited to get to know Tylor. It was a great way for them to see how the disease is effecting his swallowing instead of just reading it in a medical book or having another doctor explain it to them.<br />
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After lunch I talked briefly to the class about the struggles getting Tylor diagnosed. I explained to them that some of the doctors Tylor was seen by didn't believe that there was anything wrong with him and sent us on way feeling ignored, upset and angry. I stressed that listening to the patient or parent is very important. They know their child better than anyone. I also talked to them about how time is the enemy when you are dealing with a rare disease and listening to the parent could lead to a quicker diagnosis. I spent time telling them how much we love Dr. Patterson and how professional he is yet very personable. <br />
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After I was done the students asked questions. They asked a ton of good questions and were very interested in how Dr. Patterson differs from the others we met on our journey. I am impressed with how interested and involved this group of students are. We also showed them pictures and video clips to show them how Tylor has progressed over the years. They were very happy that I shared them. It gave them a better idea of where Tylor was before the symptoms started to current.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLzjp35XyGXftKugmttb0hQeQX_JVLlp2Zuis0_oIYg1xBI3a-S4COjC4DBJsD7gCrOxGwyJLi9-sYEIYb89jidoGJ_J3OnBFUVkoLmvnZdhLLGaKetBT1G_3n8grNZ6kjLkJtFq2CM2Q/s1600/DSC06735.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLzjp35XyGXftKugmttb0hQeQX_JVLlp2Zuis0_oIYg1xBI3a-S4COjC4DBJsD7gCrOxGwyJLi9-sYEIYb89jidoGJ_J3OnBFUVkoLmvnZdhLLGaKetBT1G_3n8grNZ6kjLkJtFq2CM2Q/s320/DSC06735.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here are some of the students with Tylor and Sy</td></tr>
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Well after I talked to the class we got to tour the ND campus while the students finished their school day. Tylor got to meet the NPC mice. The ones we saw were 70 days old and just starting to show signs of NPC like tremors. They usually live to 140 days. The ND campus is beautiful...we got some great pictures.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMab8ztXYV0IxxhgaoLTW8ELijJW2pyUCqthvEGvRrR98oTFZUVCLLshCFShSTuJnHx-ZHvkXeRnR34r6iCfz2iePYGT2qx35F0ZU04bo0R2kvfVimL8iZjPApnh3GL3phXWtqLa4xPKU/s1600/DSC06764.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMab8ztXYV0IxxhgaoLTW8ELijJW2pyUCqthvEGvRrR98oTFZUVCLLshCFShSTuJnHx-ZHvkXeRnR34r6iCfz2iePYGT2qx35F0ZU04bo0R2kvfVimL8iZjPApnh3GL3phXWtqLa4xPKU/s320/DSC06764.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Touchdown Jesus</td></tr>
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Friday night Dr. Halder, Pam (Dr. Halder's assistant), Will (her husband), Cleve (their son), Sy, Tylor and I went out to eat at a Japanese restaurant. We had never been to a restaurant where they cook the food at your table...I know we don't get out much. Anyway, Tylor loved it!! Our chef asked anyone if they wanted to catch food in their mouth, Will said sure and caught it. After that Tylor bent his head back and opened his mouth and he almost caught!!!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWZlFhleblZbB0uRqlYBTBr353j3dQbcVJU_FoQMEWydDfu4igsywIC5SL83iKnCej1xCGixlKCQdbYSpb-Lg_XH9S6Jes3nLoF8Fo7Iyd4x10equhwW28L7Eqm3QmiehILlVepK_3nz0/s1600/DSC06786.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWZlFhleblZbB0uRqlYBTBr353j3dQbcVJU_FoQMEWydDfu4igsywIC5SL83iKnCej1xCGixlKCQdbYSpb-Lg_XH9S6Jes3nLoF8Fo7Iyd4x10equhwW28L7Eqm3QmiehILlVepK_3nz0/s320/DSC06786.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tylor using his chop sticks</td></tr>
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The wonderful student had planned on taking us to a ND baseball game but they were calling for rain so we went to the College Football Hall of Fame. Tylor liked looking at the old uniforms and football equipment. We even got to throw some touch downs and kick some field golds. When we were down Tylor, Cleve, Aaron, and Will played football on the mini football field outside. We toured some more of the ND campus and ended the day with a wonderful dinner at an on campus restaurant.<br />
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<tr><td class="tr-caption" style="text-align: center;">Touchdown</td></tr>
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I can't say Thank You enough to the students who excepted Tylor, listened to his story, and spent the weekend with us!! You are all truly amazing and we wish you all the best. <br />
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<br />Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-58155660747854856082012-04-30T17:35:00.001-05:002012-04-30T17:37:43.220-05:00Tylor made the Notre Dame Newsletter<div>
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White-Richardson, White & Simon Family Visit</h2>
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<span style="font-size: 11pt;">CRND was pleased and honored to host the
White-Richardson, White and Simon family on March 23<sup>rd</sup>. The visit
was the culmination of a continuing conversation between the family and
students Natalie Bott and Aaron Patwahl (see RAREhealth Exchange on page 6).</span></div>
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<span style="font-size: 11pt;">Ms. Jennifer White shared her experience
navigating the medical system when trying to understand her son’s (Tylor
White-Richardson) disease. She delved into the medical literature, joined
family support groups and sought out medical experts. When the leading hospital
in Iowa could not provide a diagnosis, she specifically requested a referral to
the Mayo Clinic. Mr. Brian “Sy” Simon has been at Jennifer’s side and wholly
supports their family.</span></div>
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<span style="font-size: 11pt;">A Mayo physician did finally provide the
diagnosis of Niemann Pick Disease Type C. Dr. Marc Patterson, in particular,
began an incredibly supportive relationship and continues to attend to Ty with
compassion and humor. Both Jennifer and Sy appreciate Dr. Patterson’s style and
told pre-professional students, “Be a person, not a clinician, and treat
patients as people.”</span></div>
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<span style="font-size: 11pt;">The family handles challenges with
aplomb. When Tylor required the use of a wheelchair, they found the right
resources and had one custom-built. They had a wheelchair-accessible van
re-fitted for Tylor and travel across the country. Jennifer, Ty and Sy maintain
an active lifestyle and help mentor new families. Because the National Niemann Pick Disease
Foundation has been a valuable resource, they keep strong ties.</span></div>
</div>Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0tag:blogger.com,1999:blog-8901587457669173689.post-56693754725974947572012-04-30T17:13:00.002-05:002012-04-30T17:16:40.237-05:00Dr. Patterson Trip to Notre Dame<table border="0" cellpadding="2"><tbody>
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<span class="p7ap_currentmark">March 2, 2012 - Marc Patterson, M.D.</span><i>
Chair - Division of Child and Adolescent Neurology, Professor of
Neurology, Pediatrics and Medical Genetics, Director - Child Neurology
Training Program Mayo Clinic. Dr. Patterson is board certified in
psychiatry and neurology (with special qualification in child neurology
and in neurodevelopmental disabilities). Dr. Patterson is on the
Scientific Advisory Board for the National Niemann-Pick Disease
Foundation. </i></div>
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<pre align="left" class="style22"><span class="p7ap_currentmark style23">When my frail bark starts from the shore,
Far out across the unknown tide;
May some good angel guide me o'er,
In safety to the other side!</span> </pre>
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<pre align="right" class="panel_list style21"><i>David Fletcher Hunton</i></pre>
<pre align="right" class="panel_list style21"><i>Grand Haven Daily Tribune,February 15,1902</i></pre>
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At some point or another, most of us
realize the frailness of the bark upon which we sail. For many, steeped
in a cultural denial of death and blessed with good health, this
realization comes late. But, in the realm of rare diseases, the
awakening to pure vulnerability often comes at an early age and well
before the 72 years Hunton had secured when he wrote this verse. When
this awakening comes, it often appears as an “unknown tide” – in waves
of unanswered questions and grief. Then, it is vital, not to sink into
hopelessness or denial, but as another poet sets it, “to take arms
against a sea of troubles.”1 In our species, we first take up arms
against the dark and unanswered troubles by naming them and pushing away
speechless sorrow. The great botanist and father of classification,
Carolus Linnaeus, was called “God's registrar” and he wrote about the
significance of classification, which always begins at the boundary of
the unknown deep:</div>
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“The first step in wisdom is to know the things
themselves; this notion consists in having a true idea of the objects;
objects are distinguished and known by classifying them methodically and
giving them appropriate names. Therefore, classification and
name-giving will be the foundation of our science .” <i>(Systema Naturae ,1735. Trans., M. S. J. Engel-Ledeboer and H. Engel (1964), 19.) </i></blockquote>
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On
March 2, Dr. Marc Patterson visited the students and faculty of the
CRND and delivered a seminar, which would have pleased old Linaeus, “An
introduction to neurometabolic disease.” Last year, Patterson taught an
in-depth class on NP-C disease; this year, he placed NP-C in the broad
framework of metabolic diseases of the nervous system, focusing on the
common characteristics which substantiate the working
classification:“inborn errors of metabolism (IEMs).” This delicate
phrase names the general class of more than 5,000 distinguishable
disorders, which are now visible and subject to relational analysis and
systematic experimentation. </div>
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Dr. Patterson explained IEMs as "genetic
disorders in which absence or malfunction of the gene product perturbs
the internal milieu." He described a variety of gene products, all of
which are subject to errors that potentially manifest in the appearance
of disease: enzymes, structural proteins, transporters, channel
constituents, receptors, and transcriptional and translational factors.
Given the number of factors that can be deranged in the process of gene
transcription and translation, Patterson explained how the percentages
of people affected by some form of rare disease quickly mount up. In the
United States about 1 in 10 people has been estimated to suffer with a
rare disease. Still, there is a significant problem with the
undercounting of rare diseases. </div>
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According to Patterson, underestimation of
disease prevalence may occur because of overreliance on classic disease
profiles. These can blind us to the atypical presentations resulting
from mild, complex, and combined genetic errors. Additionally, where the
observable expression of a disease is developmentally staged or results
from multiple downstream effects over time, we miss in our estimation
of disease prevalence. Patterson illustrated the problem with an Italian
study of Fabry Disease. The study found an actual incidence of 1:3,100
versus a previous estimate of 1:50,000 in a region of Italy because it
captured atypical, mild and late-onset cases, which were previously
overlooked. Compared to the classic profile of Fabry, atypical cases in
this region ran 11:1. Underscoring the complexity of genetic unfolding
and the general inadequacy of the models, Patterson summarized,
"Whatever we're thinking, however complicated you think a system is, it
is really much more complicated." </div>
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Dr. Patterson's review of IEMs outlined
known genetic mechanisms, molecular mechanisms, and the correlations
between genotypes and phenotypes. He illustrated particular disorders
and described symptomatic manifestation for the audience. The genetic
mechanisms underlying IEMs include loss-of-function mutations,
gain-of-function mutations, regulatory mutations, multiple downstream
effects, and mutations based in epigenetic influences and Mosiacism.
Examples of small molecule diseases take in amino acidopathies, organic
acidopathies, urea cycle defects, fatty acid oxidation defects,
disorders of oxidative phosphorylation, porphyrias, and neurotransmitter
disorders. These conditions are associated with phenotypic
presentations, including severe life threatening neonatal catastrophes,
milder episodic dysfunction and cerebral organic acidemias. Examples of
large molecule diseases comprise sphingolipidoses,
mucopolysaccharidoses, neuronal ceroid lipofuscinosis, and
glycoproteinases. These conditions share phenotypic traits such as
progressive neurodegeneration, organomegaly, dysostosis, coarsening of
the features, ocular changes, and cutaneous lesions. Many of the small
and large molecule diseases share a common problem of deficiencies in
enzymes, cofactors (these activate enzymes) or enzyme transporters.
Complex IEMs include congenital disorders of glycosylation (CDG),
childhood ataxia with central hypomyelination (CACH - vanishing white
matter disease) and Cockayne's syndrome. These complex disorders are
characterized by combined symptoms of large and small molecule diseases
(i.e., features of slow deterioration with episodic decompensation). </div>
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According to Patterson, critical factors
for diagnosing and treating IEMs currently embrace history, examination,
presentation, and investigation. Elements to be considered in the
patient's history include membership in an at-risk population,
consanguinity, multiple miscarriages, and certain problems during
gestation. Neonatal issues may also give an early indication to genetic
disorders (eg., jaundice, organomegaly, acute encephalopathy). Beyond
infancy, other signs may aid diagnosis: dietary preferences and
aversions, unusual odors, episodic decompensation, mimicking static
encephalopathy and problems with developmental progress (eg., too slow
or significant regressions). Patterson predicted that in the future,
genetic testing will play an increasing role, although he noted social
concerns and the importance of understanding that an identified genetic
issue might not actually manifest phenotypically until late in life. </div>
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During this highly technical presentation,
Dr. Patterson made a special point of conveying to students his
testimony on the art of medicine. Given the daunting scope of IEMs and
the very real suffering signified by each of them, it was helpful to
hear Dr. Patterson's philosophy on treatment. He is after all, a
practitioner. He faces the daily challenge of nurturing the inner
resilience of his patients and their families as the waves of unanswered
questions beat against them. </div>
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<i>I want to emphasize one thing to you.
There are no untreatable disorders. We can treat everybody. We can help
everybody – however rare their disease. Whether or not there is 'a
curative' ...there is almost no curative therapy for anything - or
[often no] disease modifying therapy. Just by giving people good general
medical care, you make a huge difference. You've got to educate them
about the disease. You've got to educate their networks about the
disease. And, learn from them – it's a two-way process. You've got to
support their nutrition, make sure they're fit, make sure they've got
all the support that society can get. And, that can be a nightmare –
navigating your way through the different systems that exist. Does it
make a difference? Yes! Cystic Fibrosis. You've all heard of it. One of
the most common recessive, lethal diseases in the Caucasian population.
When I was a medical student starting in the '70s, hardly anybody
survived their teen-age years. Now, the median survival is up into the
40s and its getting up towards 50! Is there a curative therapy? Well,
there was just a paper published about a disease modifying therapy. But
[until now] there's been nothing! So, what changed? People developed
specialized clinics. They started to get aggressive about treating these
children. They developed protocols. They updated them. They tracked
progress. And, they made a huge difference in the survival from this
disease. So, that's a great model for all rare disease. You can make a
huge difference. You shouldn't be a nihilist. You can help all of these
people make a big, big difference. That is probably the most important
message of this talk. </i> </div>
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Thus, the
brilliant lodestar of the healer appears above the dark sea - attend its
light and chart a course across the sea of uncertainty that is rare
disease medicine. </div>
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tagline: Patterson, Marc C. Classification: Angel of Mayo. </div>
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1 William Shakespeare,<i> Hamlet</i>, 3.1</div>
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</tbody></table>Fight 4 Tylorhttp://www.blogger.com/profile/16523535920300302811noreply@blogger.com0