Family fighting for a cure for the disease that's killing their son
SOUTH CHARLESTON, WV (WCHS/WVAH) —
A 5-year old Kanawha County boy is battling a rare genetic disorder called Sanfilippo Syndrome. Aidan Holcomb is one of two children in West Virginia with it.
He's a playful, energetic little boy. His family calls him the "refridgerator bandit" because he loves to eat, but earlier this year the family received a shocking diagnosis. Aidan has Sanfilippo Syndrome.
"It's like an Alzheimer's for children. His body kind of accumulates these toxins that he can't flush out but our bodies can, so it kind of builds up and deterriorates his body," said Tina Holcomb, Aidan's mom.
She says he has the most severe form that causes the earliest death in children.
"Our world was turned upside down. We love him. He is our baby of three boys. We love him dearly, but it breaks your heart when you get something this devastating to know there is terminal illness. There's no cure. No treatments," said Holcomb.
Now Tina and her husband are on a mission to raise money to find a cure for the disease that's killing their son. They've put together a fundraising event on Saturday at the Hansford Baseball Field in Eastern Kanawha County. Tina says doctors have not told them how long Aidan has, so the family is making the best of the time they have with Aidan.
"They say that Sanfilippo Syndrome is a child's syndrome because they don't live to adulthood," said Holcomb.
Next month the family is going to Disney World thanks to the Make-A-Wish Foundation.
Th family is holding a fundraiser Saturday at Hansford Baseball Field. A walk begins at 9 a.m., followed by a kayak float trip at 11 a.m. A corn hole tournament and softball tournament also will take place.