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Determined family seeks cause, cure for child's disease

Posted November 27, 2010
Updated November 28, 2010

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— 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. 

Family seeks funds for AHC research, awareness Family seeks funds for AHC research, awareness

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.

12 Comments

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  • jodijojoandpete Dec 1, 2010

    God Bless your family and my prayers are with you. I hope things work out for you. He is such a cutie pie and so brave. My heart goes out to all of you.

  • jwuchich Nov 29, 2010

    Well it might make sense to make that argument...until one of those people is you or someone you love.... http://www.refresheverything.com/cureahc text 104112 to 73774 Thank you so much for your support!

  • JAT Nov 29, 2010

    And sadly, you have to argue how wise it is to give money to something that only 600 people in the world suffer from versus something that could help everyone.

  • JAT Nov 29, 2010

    Is there medication elsewhere since it only says nothing's approved in the US?

  • JAT Nov 29, 2010

    Since it's genetic, it seems there can be no 'cure' unless there can be an embryonic test of some sort.

  • WXYZ Nov 29, 2010

    Another example of the potential benefit of human stem cell and genetic research. Currently, there seems to be no hope of discovering the cause, much less the cure for this very rare disease, and many other diseases, which affect children and their families. What they need is help, on a daily basis, to cope.

  • ledwards0926 Nov 29, 2010

    to JAT

    "guess people feel it's more important to save pit bulls and feral cats.....and we wonder why we can't find a cure for cancer."

    It is b/c of "those" people that finding cures is getting harder and harder. They are too busy protesting animal rights than worrying about finding a cure. I hope the parents win the grant...such a cute boy.

  • Mrs. Beasley Nov 29, 2010

    Each email address gets 10 votes a day to be used for different causes. They use the email address to keep track. There is less mass voting this way.

  • JAT Nov 29, 2010

    I'm sure, though, that the SPCA folks who are in 1st place now have more people hitting vote over and over. I think each person should only get one vote. Has the world turned into one big American Idol???

    I guess people feel it's more important to save pit bulls and feral cats.....and we wonder why we can't find a cure for cancer.

  • busyb97 Nov 29, 2010

    JAT- it is annoying, I agree, but I've been voting all month for AHC, and have yet to receive any emails, etc from them.

    By the way- this little guy is so cute. I met him a few weeks ago- he was so excited to see my boys and about fell out the door!

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