October 26, 2010

October Awareness Talks in Mount Pleasant, Iowa

Danny Clark (NPC)
10/17/79 - 4/8/98

Lisa Clark (NPC)
9/30/82 - 12/12/02
Howard and Susie Clark of Mount Pleasant, Iowa, will be making two presentations to raise awareness of Niemann-Pick Disease during October Awareness Month. Susie will first address her P.E.O. ladies group, and then the couple will be giving a talk to their Methodist Church group later in the month.

The Clarks lost both their children, Danny and Lisa, to Niemann-Pick Disease Type C. The photo above is one of their mom's favorites, taken on a family outing to see a hockey game in 1997. Susie writes about her children, " They were fabulous kids, and taught us so much about courage, strength, and acceptance."

Walking for a Cure...In Memory of Riley Corbitt

So the whole reason we went to Alabama was to attend the Walking for a Cure event. In past years they have walked from Woodville to Scottsboro, which is 18 miles!! I was happy to hear that they shortened the walk to 10 miles. Because believe me I was hurting at the end of the 10 miles. It is hard work pushing that wheelchair. I tried to get Tylor to switch me places but he wouldn't. It was a good thing I had Amber with me!

The walk started at 10am on Saturday October 16th from the Woodville High School. Upon entering the school we were surprised with a banner that read "Welcome Tylor". I started to cry...how thought of Haley and Paula!! Before the walk Haley let off a bouquet of balloons for Riley!

I was so happy we went there and participated in the walk. I learned so much about Riley! She always had a smile on her face and she loved butterflies. She had to nicknames...Riley Bug and Boo. Thank you Paula, Haley and all there friends for making us feel welcome. See you again next year!

Riley Corbitt

Sweet Home Alabama

We I first decided to make the trip to Alabama for the walk I didn't think there was going to be much to do there. Boy was I wrong. The Scottsboro area is in the mountains and it was a beautiful time of year with the leaves changing. There is so much to do from fishing, hiking, boating, and many other outdoor activities to shopping, dining, and bed and breakfasts.

We didn't have a lot of time with the walk on Saturday but we were able to hit Cathedral Caverns and U.S. Space & Rocket Center.

Amber and Ty outside the cave

Me and Ty

The huge opening!

Looking out from the start of the cave

When we got to the Cathedral Caverns we learned that there are only guided tours but we had to be at the school for a meeting about the walk so we wouldn't be able to go on the tour. But the guy that worked there was nice enough to take us on a private tour. The cave is beautiful! The entrance measures 126 feet wide and 25 feet high. Soon after we entered the cave Guy, our guide, pointed out a shark tooth embedded in the ceiling. He explained that the ceiling of the cave was once the bottom of the ocean. Our last spot before having to turn back was the largest stalagmite in the cave. It was huge! After the meeting we wanted to go through the entire cave but there was another person in a wheelchair on the tour so I wouldn't have been able to ride with Tylor. But as least we got a private tour through some of it.

Check out this huge stalagmite

Since we couldn't go through the cave we decided to hit the U.S. Space & Rocket Center in Huntsville. There we were able to see what the inside of space ship and see how they are launched. It was neat to see how the astronauts sleep, use the restroom, store food, and grow plants while in space.

This is how they sleep...weird huh?

Look how big this is compared to Ty's head

And of course we had to go shopping! We found a store called Unclaimed Baggage in Scottsboro. They buy unclaimed baggage by the truckloads! So it is like going to Goodwill but better! The store was huge and we found some great buys...Ty slept most of the time.

October 20, 2010

New item added to the online auction

Hey everyone....

A Creative Cooking Cookbook has been added to the Niemann Pick Online Auction. This cookbook was created by Ty's family and friends. It has almost 700 recipes from all over the United States. The Galena Middle School eighth graders designed the recipe dividers and many of them brought in recipes for the cookbook.

I use mine all the time! Ty has many favorites in this cookbook and every time I use it brings a smile to my face knowing all of the people involved in making this happen care about helping Tylor fight this horrible disease.

Please visit the online auction to place your bid!! This will be your most used cookbook in your kitchen I guarantee it!

October 19, 2010

Attention Golfers!!

There is a golf package on the online auction for Niemann Pick Awareness Month that is in our neck of the woods. It is at Great River Road Golf Club located in Nauvoo, Illinois. Nauvoo is about 3 hours from Dubuque, IA. This would be a great get away for two couples or a group of friends. Check it out on the online auction and bid, you know you want to.

Here are some details...

Estimated Value $700.00

Item Number 161

Item Description
3 Days Unlimited Golf with Cart + 2 Nights Lodging +
$142.00 worth of Food and Beverage @ Great River Road Golf Club
* All taxes are included

Special Instructions
For Additional information please contact rkelly@alum.bryant.edu.
Ask the seller a question about this item.

October 18, 2010

Brotherhood for Democracy set out to help The Niemann Pick Foundation

I came across a website about a motorcycle club the other day and I couldn't believe they had information about NPC on the home page .This goes to show the power of spreading the word about NPC and that people truly care about fighting for our children!!

By George (memeber of Brotherhood for Democracy B.F.D.)

For some months I have sought a cause for the B.F.D. other than our already important and known cause to restore our country to the proud nation we once knew and the support of our servicemen and vets. It is only fitting that this cause be for the youth of our country for they are truly our nation’s future. This rare and unknown to most disease attacks our most vulnerable. Our Children whom we hold dear to our hearts. We will try to inform and support the families who endure this cruel disease to the best of our abilities and hope you will help us do so. Below you will find a description of the disease and a link to the Niemann Pick Foundation. God Bless the children for they are truly innocent.

Niemann-Pick disease refers to a group of inherited disorders known as leukodystrophies or lipid storage disorders in which certain fats accumulate in the tissues like the brain and liver and cause damage. In Niemann-Pick disease, the body is unable to break down fats completely, so they accumulate in the tissues and cause damage.

October 16, 2010

The Roberts keep spreading the word

Hanover — Michael and Holly Roberts knew something was not right with their daughter’s health.

But after multiple doctors’ appointments, the questions and concerns the family had about Erin’s health remained unanswered.

Then when Erin was 16, after she had a seizure and was taken to the hospital, she was diagnosed with Niemann-Pick Type C—a rare and fatal developmental disorder.

After a number of years of doctors’ visits, lifestyle changes and many other challenges,Erin passed way on Dec. 1, 2004. She was just 24.

Today, Erin’s parents, along with her younger sister, Rebecca Jurgela, are working hard to make sure other families do not have to go through what they did. October marks Niemann-Pick awareness month, and this month the Roberts family is gathering information and sporting bracelets with ‘Persevere’ engraved in them to spread awareness about Niemann-Pick, a little known disease.

“Over the years it was all so frustrating not to know what kind of disease she had,” Holly Roberts said. “That’s why we do awareness. So that people can know about NPD and know the kinds of things that can be done.”

According to Michael, Niemann-Pick is a generative disease, and in order for a child to be born with it, both parents must have the trait. In Erin’s case, Michael and Holly both had the trait. However, the disease can affect some children and not others. Rebecca was tested, for example, but found not to be a carrier.

Though there is no cure, the disease can be detectedthrough prenatal testing, Rebecca said, and that’s what she did and hopes that other soon-to-be mothers will as well.

According to the websitewww.nnpdf.org,about 1,200 children around the world have been diagnosed with Niemann-Pick. The disease slowly takes over the functions of the liver, spleen and brain, leaving the child neurologically impaired. With that, the child’s memory slowly goes, as does the ability to walk and to eat, and it eventually takes over the organs in the body.

According to Michael Roberts, one of the symptoms of the disease is vertical gaze palsy, which is the inability to move one’s eyes up and down. Michael said that’s one of the things he always noticed about Erin. When she used to hold his hands and walk up his legs and flip over, Michael would notice that Erin’s eyes would go back into her head, but he said no doctor understood this symptom until much later down the road.
Michael explained that the disease first became recognizable in the United States when People Magazine did a story on the family of Ara Parseghian in 1995. Parseghian was a well-known former football coach at The University of Notre Dame, and in 1994 he learned that three of his four grandchildren were diagnosed with this rare disease.

And so Parseghian set out to spread information and awareness about the disease, to both doctors and parents. Though Parseghian’s grandchildren have since passed away, the Ara Parseghian Medical Research Foundation, based in Arizona, still continues to run fundraisers to find a cure for the disease.

“Parseghian was really the first one to break out and try to build awareness and raise money for the disease,” Michael said.

Today, the Roberts, who live in Hanover, are trying to spread awareness as well.

Holly serves on the board of directors for the National Niemann-Pick Disease Foundation, which raises money for research. The foundation also hosts an annual conference that provides support groups for the families who have been touched by the disease.

“It’s a place where families can speak openly about their child or their family,” Holly said, “and it serves as a kind of support group.”

Attending the conference can be a difficult experience for the Roberts family though.

“We relive it all over again when we go,” said Michael. “You see kids one year and they’re functional and talking, and then the next year they are in a wheelchair and it just tears your heart out.”

At the event last year, Rebecca gave a talk on what it was like to be the younger sibling of a family member who has the disease.

“I talked about what it’s like for the undiagnosed, and since it turned out to be mostly parents, I just told them that each child growing up needs the same amount of attention as another,” Rebecca said. “I tried to stress to them how I felt so that they would be able to prevent that in their families.”

This year Rebecca’s cousin Ryan is hosting an on-line auction throughout October. The auction includes goodies and baskets that organizations have donated for the cause, and visitors can go online and bid to win one of the prizes.

The website can be reached via the www.nnpdf.org site.

“All of the money raised will go towards research for NPD,” Rebecca said of the auction.

The Roberts family has been trying to spread awareness in other ways as well.

Since June of 2004, the Hanover Chamber of Commerce has hosted a road race in Hanover, where all the proceeds from the event go to research the disease

“We have been raising awareness since we found out about it,” Michael said.

She was one family’s ‘angel from Heaven’

Asked to share their memories of Erin, her parents and sister had trouble finding where to begin.

“I look back and think our miracle was Erin,” Michael said. “There wasn’t a life she touched that was affected by her.”

While in the second grade, Erin Roberts transferred from Holy Family Elementary School in Rockland to the Hanover Public Schools, to receive special care. In the ninth grade she transferred again, to the Cardinal Cushing Centers.

Michael recalled Erin holding the hand of a girl who shared her room in the hospital, and calling her, her friend. He said there was a boy in school who was blind and Erin would hold his hand when he crossed the street.

“She just had an awesome spirit about her,” Michael said.

Michael said they would ask Erin how she was doing on a particular day and she would always say ‘I’m awesome.’

“Every individual is a gift, but she had a special part that carried her all the way to the end,” said Michael.

But though they said they adored every minute they spent with her, they did begin to notice little things that worried them.

She might not, for example, remember what she’d had for lunch. She might not be able to walk straight.

Erin’s parents took her to a number of doctors, and they left with some not so helpful advice.

Michael said one doctor diagnosed Erin with Lafora disease, and told them not to tell anyone because schools would not likely admit her if they learned she had the disease.

“So with that diagnosis we were left with the idea that we have to walk this path alone,” Michael said.

Another doctor told the family to take Erin home and get her comfortable and wait for her to die, Michael added.

He added that another doctor told them to try tutoring her, and to call him back in a month to see how she was progressing.

When Erin was 16 she had a seizure. Soon after, she was diagnosed with Niemann-Pick.

In the weeks and months before her death, Erin lost a number of abilities, including the ability to eat on her
own and walk on her own. There were certain things she was able to remember and hold on to, though, her sister recalled.

“She never forgot who we were,” said Rebecca, adding that she also remembered lyrics to songs and certain prayers.

Written on her tombstone in the Hanover cemetery are the words ‘Heaven is a wonderful place” because the Roberts family said they used to tell Erin she was an angel from Heaven. When they told her this she would sing a song from church ‘Heaven is a Wonderful Place,’ which she always remembered.

‘Heaven is a wonderful place, filled with glory and grace. I want to see my savior’s face, heaven is a wonderful place.’

For all who've gone before us....

The message below is from Aaditya's family. Aaditya recently passed away from NPC but the family is still working hard to raise awareness and funds for the Nieamann Pick foundation. Please take a few minutes of your time to vote and pass it on to your family and friends.
Music Speaks 2010 Charity Competition
by Shama Lakdawala (videos)

Hey everyone!

We really really really need your help! Please vote for Sowmya & I, it will only take a minute. Pass it on to your friends. View it, comment on it, share it, & like it as many times as possible! It would mean the world to us.

More information about the Competition: http://www.youtube.com/watch?v=7slkT3T4p_Q

Link to our video so you can VOTE:) http://www.youtube.com/watch?v=C7H4cck6zZo

Hope for Aaditya website: http://www.hopeforaaditya.org/

The charity we are representing is Hope for Aaditya. Hope for Aaditya helps raise awareness, money, & support for people infected with Niemann Pick Disease (NPD). NPD is an extremely rare & fatal disease that attacks young children. Currently, there is no cure for the disease. Help us find a cure & raise awareness by voting for us, sharing our video, & spreading the word! :) For more information about Hope for Aaditya, Niemann Pick Disease, & families affected by the disease check out www.hopeforaaditya.org

Thank you for the support!
♥ Shama

Visit Hope for Aaditya at: http://hopeforaaditya.ning.com/

October 15, 2010

Friday Night Lights

 Tonight we went to see Ty's friend, Grant, play football. We met Grant in Seattle too...he came as Spider Man!! The game was an hour and a half away so it was a late night for all of us but we had a great time.

Grant is the Quarterback and is very passionate about the game....just like Brett Favre Ty said. He had so much fun watching the game and cheering for Grant or was that watching the cheerleaders? I caught him looking at them a couple of times. But Haley and Abby kept him in line. Haley is Riley's sister and Grant's girlfriend. Abby wanted to steal Ty from us and told him not to be flirting with any other girls. Ty just laughed and got all red in the face. Ok ok ok back the football game. Ty got to see Grant score a touchdown but unfortunately the Woodville Panthers weren't doing so hot. During the forth quarter a young man, Jason, got injured and was taken in the ambulance to the hospital...our prayers go out to him and his family.

#10 is Grant...Ty's friend

Doesn't he look like George Washington!!

The players take a knee to pray for their injured teammate

Grant and the team drink some pickle juice to relieve craps

Ty with the Woodville mascot...The Panther

Soon after Jason was loaded in the ambulance and the crowd applauded we hit the road back to Scottsboro because Ty was very tired and we have another big day ahead of us tomorrow.

October 14, 2010

We Made It!

A few days ago I blogged about us taking a trip to visit a NPC family we met in Seattle at the NNPDF family conference. Today we left at 6am to make the 11 hour trip to Scottsboro, Alabama. The trip went pretty well even though every gas station we stopped at was not really handicap accessible. I made suggestions on how to improve the accessibility which were not taken real well. If only they had to deal with someone in a wheelchair for a day maybe they would realize how difficult it is to get them around.

Coming down into Scottsboro there is a steep grade hill and Tylor got to see the run away ramps for the semis. He was able to see tracks from trucks that had to use them, he thought was pretty cool. I am sure it wasn't too cool for the truck drivers.

After getting checked into the hotel we were going to grab a bit to eat....well there was a problem with our room. The people didn't check out that morning and rented the room for another night. What??? I reserved this room for Thursday through Saturday but they told me sense they were there first there was nothing they could do about it. They offered us another handicap room but it was smoking...no thanks. But they kindly told me the room would be available tomorrow night and what are we suppose to do tonight, I asked?? So back on the road we went to find a hotel. We found a Hampton down the road, they staff was getting and got us into a handicap room right away.

Tylor is now sleeping snug as a bug in a rug....

October 13, 2010

Another child affected by NPC...Our Kaiden 1


We met Kaiden and his Mother, Sharla, in Seattle last year. Kaiden is such a character...he was the little photographer the night of the conference dinner and dance. Even though they live in Canada and we have only met them once we feel a connection with them. Please view this video and pass it on to friends and family.   Our Kaiden 1

October 12, 2010

Remember Riley

In August 2009 Tylor, Sy and I went to Seattle for the NNPDF family conference. While there we met some amazing families struggling with NPD or struggling with the loss of their child from NPD. Unfortunately, we never got to meet Riley Corbitt but we did have the honor of meeting her family and friends. Tylor hit it off with them right away and really bonded with them. So in support of National Niemann Pick Awareness Month and Riley's family we are heading down to Alabama to participate in the Walk-a-Thon!! I know driving 12 hours to walk crazy right?? So I decided to make a vacation out of it. 

Niemann-Pick Disease Type C Walk-a-Thon
Saturday, October 16, 2010
Woodville, Alabama

Riley May Corbitt (NPC)
7/27/02 -10/29/08

The Woodville (Alabama) High School Student Government Association will sponsor a walk-a-thon in memory of Riley Corbitt (NPC) on Saturday, October 16. The event will begin at 10:00 a.m., at the Woodville High School.

Walk-a-thon participants are asked to try for six sponsors each, representing the six years Riley was with us. Click here for a sponsor sheet.

October 11, 2010

In Loving Memeory of Stacey Vorpahl

One Child’s Story Through Niemann-Pick Disease Type C

Stacey Lynne Vorpahl (NPC)

January 3, 1985 – October 9, 2004

In loving memory of Stacey and all the other precious children lost to NPD, and in honor of those still struggling, please join with us in our Quest for a Cure. Follow the link to view Stacey's story, as told by her parents in text and photos.
10 – 10 – 10 Challenge
Please Help Raise Awareness for Niemann-Pick DiseaseMeet the NNPDF's 10-10-10 Challenge and take at least one simple action on October 10,2010, to spread the word about this devastating disease.

City of Dubuque Proclaims October Niemann Pick Awareness Month

We just received the Proclamation from the City of Dubuque proclaiming October National Niemann Pick Disease Awareness month. Unfortunately we didn't make it to the City Council meeting to accept the proclamation in person.

Thank you Mayor Roy Buel, Mayor Pro-Tem Karla Braig and the entire City Council for proclaiming October as National Niemann Pick Awareness Month.

Tylor takes Area First

Ty getting started
October 8th Tylor had his annual Special Olympics bowling tournament in Davenport. I joined in the fun because they don't have a way to transport Tylor in his wheelchair. I it touching to see how much all the athletes enjoy being apart of this tournament. Ty's helper was Sam, his good friend from Jefferson. They had so much fun together!! She even let him wear her hat for luck and guess what it helped...he won AREA FIRST!!!

Gabby and Sam being silly with Ty

There's Sam's lucky hat

Team Jefferson!!
After they were done bowling there headed to McDonald's in Maquoketa for lunch so I told Coach Lucas we would meet them there. Well after taking a little tour through Bettendorf and back through Davenport we finally made it McDonald's. Ty should got a kick out of me getting lost.

I got my eye on you!!

October 9, 2010

10-10-10 Challenge

October is National Niemann Pick Disease Awareness Month and with Sunday being 10-10-10 we are challenging everyone to spread the word to at least 10 people. Send Ty's website link to your friends and family and tell them to share it with 10 people and so on.

Another great to help is to visit the websites below. These are 10 other families affected by Niemann Pick Disease and are fighting everyday just like us to find a cure. Together we can make a difference...will you help make a difference??

Addi and Cassi Hempel

The Hadley Family

Hope for Aaditya

Brisan and Parker Stults

Gabrielle LaVerde

Dillion Papier

Jessica Leoni

Georgina's Gang

Our Kaiden 1

Breann Chavez

October 7, 2010

They're here!!!

Well Tylor had his final fitting for his AFO's on Wednesday. He did a great job while Pat adjusted the braces to fit just right. He wanted to make sure that the braces weren't too long and weren't digging into his leg or foot. He marked where he needed to cut the braces down and where they needed to be flared. Tylor did so well he fell asleep during the fitting.

Catching flies waiting for Pat to make his adjustments

Ty laughing in his sleep

The finished AFO

Pat told me to leave the braces on for most of the night until bed to see if there was any redness from pressure points and if so to let him know and all was good. And I couldn't believe the difference in his walk with the AFOs on. He walks so much better and isn't as frustrated!! Of course he still has an unsteady gait but he doesn't lean so much and there is a lot less pressure on his ankles, knees, and back. The next step is to get the walker, which we should be getting soon. So look for Ty to be up walking around a lot more...who needs that wheelchair anyway right??

Chillin' with his new AFOs