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Nellie Carroll

Nellie Carroll, age 7, has been wheelchair bound her entire life due to spina bifida. We first heard of Nellie from Board of Director member Chester Fort.  Through Chester’s work at MeadWestvaco he has contact with Nellie’s father.

Even after multiple operations, Nellie remains completely wheelchair bound.  Despite this fact, she is one of the cutest and most positive kids we have ever seen.  Chester Fort heard the father discuss a product called a “stander”.  And the “stander” does just that:  the child is strapped into the device and she is held in and supported by the device while standing.  The “stander” has wheels and allows the person to use it to not only stand, but to also be mobile while standing.  The “stander” can actually be thought of as functioning like a standing wheelchair.

Pedaling for Kids purchased the stander for her and we have now presented it to Nellie and her family.  Nellie had absolutely no problems in adjusting to it and she absolutely loves it.  Can you imagine being able to stand for the first time in your life?  Wow – it’s incredible.  What a blessing and a privilege to help such a sweet child and family.

Photos:

Nellie and family at presentation.  Front row, left to right:  PFK Board members Chester Fort and Rhonda Eysel, Nellie, her mother Valerie and sister Joanna.  Back row, left to right:  PFK Across-the-state cyclists CJ Baker and Jackie Aasand, PFK Board member Jay Parker, Nellie’s father Daniel, Nellie’s brother  Nate and sister Rebekah

Nellie with new stander

Ty Kingery

We first learned about Ty from one of our long-term friends Libby Campos.  Libby is a special-education teacher at Northside High School here in Columbus, Georgia and Ty was one of her students.  She had applied for help previously for other students in her class but was unsure if we could help Ty and his parents.  She wanted to let us know Ty’s mom Amy had embarked on a fund-raiser to hopefully raise enough money to purchase a wheelchair-accessible van for Ty but Libby knew we were still a relatively new charity and were limited in funds.  Nonetheless, Libby – never  quit or give up on a challenge – wanted Pedaling for Kids to know about Ty.

Ty was a typical healthy child until the age of 10.  He was a gregarious, hard-charging, always-smiling kid who loved sports.  He especially loved soccer.  But then something happened.  Something just wasn’t right.  After months of testing doctors informed Amy that Ty had Juvenile Huntington’s Chorea.  Huntington’s Chorea (HC) is a neurodegenerative genetic disease that is quite rare – occurring in only 7 of 100,000 people.  HC typically manifests its symptoms in middle-aged adults between the ages of 35 -45 years of age.  Huntington’s is a devastating disease with no cure.  Those with HC end up with very rigid spastic movements, are wheelchair bound, and need full-time care.  The life expectancy in those diagnosed with HC averages 20 years from the time of diagnosis.  Juvenile Huntington’s Chorea is even more rare than the typical HC; only 6 percent of HC occur before the age of 21.  Juvenile HC has a more rapidly progressive deterioration than the Huntington’s starting in middle age.

Ty’s mother and stepfather Scott contacted Ty’s biological father after Ty was diagnosed with Juvenile Huntington’s to give him the terrible news.  Ironically, Ty’s biological father had just been diagnosed with the adult form.

We first met Ty and his family in January of 2014.  Ty was now 17 years old and his Juvenile Huntington’s had already taken a devastating toll on him.  He was wheelchair-bound and had a gastric feeding tube in place because of his inability to swallow.  Although 5 feet tall, Ty weighed only 90 pounds.  His mother Amy had long since put her career as a respiratory therapist on hold to care for Ty full-time.  Libby wanted us to make sure we met Ty and his family; she told us we wouldn’t believe how positive and wonderful they were.  And she was absolutely right.

Our Board of Directors met immediately to see if we could help.  Our community interaction up to that point had certainly been on a smaller scale financially.  Scott, Amy, Ty and his younger brother Robert were meeting with our Board in less than a week – and we were blown away.  We were not only amazed and inspired by their love and commitment to each other, but were moved by their ability to find positivity in all they encountered.  Amy, weighing only 130 pounds herself, was struggling in transporting Ty.  She not only had to fold Ty’s wheelchair to put it in their present vehicle, but she also had to physically lift Ty to put him in a car seat.  It was not only difficult for Amy to get Ty into a car seat and secure him, but the entire process was a very painful one for Ty as he had become very rigid with the disease progression.  It had become so painful to get Ty out of his wheelchair for the ride that Amy had taken on the project of raising money for a wheelchair-accessible conversion van on her own.

After our meeting with Ty and his family, our Board promptly voted unanimously to participate.  We decided – with Scott and Amy’s consent – Pedaling for Kids would spend a larger amount of money in order to secure a newer, lower-mileage van.   Although the amount to be spent was by far our largest commitment to date, we felt our donors and supporters would wholeheartedly approve how their money was allocated.

Within two weeks Ty and family had a beautiful, low mileage van that allowed Amy to load Ty – while still in his wheelchair – into the conversion van via the back door of the van.  No more painful rides for Ty!  And no more lifting and risking injury for Amy…

Photos:

Very sadly, we lost Ty March 4, 2014.  This incredible family however never ceased to be thankful and positive.  And thru the loss, it was Amy and Scott who reminded the rest of their family and friends to rejoice in the happiness that Ty brought to them and to everyone else with whom Ty had ever met…

Will

Will is one special guy. We found out about Will last year when school administrators felt he couldn’t stay in regular classrooms. Will was born with Nager Syndrome and one of the issues he has had to deal with since birth is the absence of thumbs. And now he could not keep up in the classroom because he was being slowed down too much by not having the full, rapid use of all ten fingers.

We at Pedaling for Kids are thankful we were able to provide Will an iPad. Once again, our trusted friend and consultant Susan Elder, evaluated Will and the situation and chose the perfect iPad applications to help him. Not only is Will doing great in school, but his essay “Laws of Life” was recently chosen as one of the top essays in the entire school system! As an even greater honor, Will was then asked to read it to the Muscogee County School Board. Here is part of an email one of our Board Members, Rhonda Eysel, sent me when she heard the news about Will’s recent honor. Her words could not summarize better all of our feelings about Will:

“I’m so touched and moved by his bright spirit and willingness to persevere despite how many odds are stacked against him. What a blessing he is and I have to believe God is using him in ways one can only imagine. And he wrote it on the iPad PFK gave him!”

To better share the spirit of Will we have included a special section committed just to him. I encourage everyone to first read his essay on PowerPoint, then watch the video of Will’s presentation to the School Board. Will is one special guy.