Local News

Determined family seeks cause, cure for child's disease

Posted November 27, 2010 10:19 p.m. EST
Updated November 28, 2010 12:18 p.m. EST

— A Rolesville boy with a rare disease has a chance at something almost as unlikely.

Matthew Wuchich's parents are willing to do almost anything to increase awareness and research funding for AHC, or alternating hemiplegia of childhood. 

"You just don't know where to turn," his mom, Renee Wuchich said. 

"There's no medication that's effective and approved in the U.S., so just getting the medication is so difficult, and then trying to figure out what his life is going to be like," she continued.

AHC afflicts Matthew, 3, with sudden, temporary bouts of paralysis that can last minutes, hours or even days. He is one of only about 600 known cases in the world. 

"That's one of the problems with this disorder; it's just so rare," said Jeff Wuchich. "It's so difficult to diagnose that there's just not enough awareness of it."

Through the Alternating Hemiplegia of Childhood Foundation, the Wuchichs are campaigning for a $250,000 Pepsi Refresh grant. 

Jeff Wuchich said Matthew's determination was what led him to take a leadership role in the foundation. 

Matthew was born with complications. The paralysis started when he was about six months old. He needs special braces to walk and has difficulty learning. The attacks act as a short-circuit in his brain, his dad said. 

"He should be running around, jumping, playing, asking a million questions, but he's not," his father said.

"He will still really try. You watch him trying to learn. He wants to learn. He wants to be able to do like other people and he pushes himself to do it."

"He loves music, and he loves books," Renee Wuchich said. "He goes to preschool, and he loves learning things with his friends. It just takes him longer to learn things because of his developmental disabilities."
 
"It's very challenging as a parent, because you want the best for your child and you work so hard to make his life better," she said.
 
"Right now, we don't know what causes AHC," said Jeff Wuchich. "They're pretty sure it's genetic, but this project will go toward confirming that."

There is reason to hope the quarter-million dollars will make a huge impact.

"Other diseases that won this Pepsi grant have already made great strides in just the last year and cleared the way to finding a cure," Jeff Wuchich said.

The AHC research grant was running second in the voting on the Pepsi site Saturday night. The contest ends Nov. 30.