Person of the Week: Fox family

August 7, 2009 3:25:08 PM PDT
Like a typical kid, 11-year-old Kevin Fox likes to play around. His friendly smile shows he loves life and his family, but the 11-year-old has a rare degenerative neurological disorder. Kevin's parents started noticing changes in his behavior at the age of three when he started trembling and falling down.

"He had lost his speech. He lost his ability to eat. He lost his ability to walk and for about 6 years we did not have a diagnosis," said Michael Fox.

After various hospital visits and tests, doctors at UNC Hospitals finally diagnosed Kevin with neurodegeneration with brain iron accumulation - or NBIA - a disease that's so rare that it affects only a few hundred people in the world.

An even smaller number of doctors are doing research on NBIA, and the Fox family fears a lab at the Oregon Health and Science University dedicated to finding a cure for NBIA may be forced to close due to budget cuts.

It's run by Dr. Susan Hayflick.

"All of us families with children across the country with NBIA are pushing to raise funds to keep that lab open. We have a goal of raising $250,000 by the end of this year. Dr. Hayflick thinks she can keep her lab open for two year if we can accomplish that," said Michael Fox.

About 200 families are trying to raise the quarter of a million dollars. Kevin's dad says he knows that has its challenges.

"The typical charities don't get behind them. The typical corporations don't get behind them because you're talking about 300 kids worldwide," he explained.

This family is focused on one kid who means the world to them.

"I never have to wake up and wonder if somebody wants to see me in the morning because I know that he can't wait for me to get into his room. When I walk in, his eyes light up and his face lights up and it's amazing," said Wanda Fox.

And the Foxs know they have an amazing task ahead of them. Right now, it's all about spreading the word about Dr. Hayflick's work, NBIA, and Kevin.

"It is time to reach out to everyone who have every said 'Let me know what we could do to help,' and we're going to take them up on it," said Wanda Fox.

There's a lot more information about NBIA and how you can donate to the Hayflick campaign at: www.nbiadisorders.org

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