NPC Press Release on the Cyclodextrin Trial

Tylor is happy to announce along with the NIH........Drum Roll Please

Dear Families and Friends,
 

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.

Click Here to see the press release.

Wow...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.

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.

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.

Tylor and Mom at Homecoming.

Elena and Tylor's first picture of the night

What a cute couple!!!

 

Time to say Goodnight!!

 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.

 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.

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.

NASHVILLE

Where 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.

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.

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.

Here are some pictures

Taking a nap after swimming

Karen Quant introducing the doctors & researches involved with the NPC community

The children that where taken from us too early last year

Ty at the Rain Forest Cafe

Throwing money into the fountain.  All the money was donated to NNPDF

The Moms at Hooters!! Tylor got a shirt signed by all the girls there.

We got to see some ND friends there as well.

We had a western theme this year and the kids loved the cowboy hats

Mom, Ty, and Kim dancing

The Moms are getting down.

3 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. 

Here are some pictures that were taken over the few weeks he was there.  There is no denying he had a blast!!

Ty and Cassi

Ty and Kristina

Got a little Cowboy in ya!!

Saddle up partner

A little water time with Cassi

Ty loves blowing bubbles

Dancing with the girls image that!  You hotdog Ty

Check out his cool shades

Look closely at Kristina's face...it says I Love Tylor

Surrounded by girls again

Art and craft time

His bear has to go with him too

Look at that smile

Push American guys. If you haven't heard about them. Check them out...they are doing some great work for special needs camps across America.

Here's to you Rich

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....

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.

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. 

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!! 

I hope all his readers are enjoying their summer as much as we are...Thank you for your love and support!!

Where did the time go?

Hello Everyone,

I haven't posted an update on Tylor in a while and I finally found some time to get on the computer to do it. Well it has been busy around here for starters I started a new job at Edwards Cast Stone Company as a part time Drafter so we have been trying to get things down around the house. Tylor had his Special Olympics Bowling tournament a few weeks ago, he got third place. His first game he got three strikes in a row....and there were no bumpers up! I can't even do that with the bumper up! He starts practicing for his Special Olympics swim meet on Monday at school. Every Monday they get to spend an hour in the pool, lucky guy! School has been going well. He loves to make people laugh and hang with his friends. He has a new friend, Brandon. Brandon is in the Life Skills program with Tylor and he loves to help Tylor. I picked Tylor up the other day for therapy and as I was loading Tylor Brandon yelled wait and he kissed his head! Tylor keeps touching the lives of others where every he goes.  He is also working on using the DynaVox during school to help communicate with the teachers and his classmates. The DynaVox is a communication device that is setup to Tylor's needs.

We also have been working closely with Notre Dame and have been sharing Tylor's medical records, pictures, and videos. They are working on rare and neglected diseases and NPC is at the top of the list! After reading through all the records they will compile all the information into a 2 to 3 page medical summary. They are also working on putting together a website for doctors who are struggling with diagnosing a patient. We have been in touch on a weekly basis and through email. They are almost done with Tylor's summary.

Tylor, Jill, and I will be traveling to NIH December 4th through December 9th. Tylor will be part of a Clinical Investigation. This is not to provide treatment for NPC but rather to evaluate a series of clinical and laboratory tests that might be useful in a subsequent study to determine if an investigational drug is effective in slowing the progression of NPC. Unfortunately for Tylor he will have all prior tests done again. Here are some of the tests that will be done; Blood draws, urine collections, lumbar puncture, MRI, psychological testing, hearing evaluation, skin biopsy, and genetic analysis are some of them. He will be sedated for the MRI, lumbar puncture and the skin biopsy so he won't be in pain. He just gets really sick after sedation. We are looking forward to this trip and hope that some how Tylor's results can help aid in the research effects at NIH. We will be posting update throughout that week.

So as you have read we are busy around this house and it is only to get crazier with the Holidays quickly approaching.

A Blast from the Past

Tylor's old para from Jefferson dropped off some pictures of Tylor and I have to share some of them. He looks so young! It's hard to believe my little boy is now a young man.

This is Joyce, the para who gave us the pictures

Sam, Tylor and Gabby then

Gabby, Tylor and Sam now.