Furlough affects Bellaire boy with rare, fatal disease

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by Andrew Horansky / KHOU 11 News

khou.com

Posted on October 4, 2013 at 10:24 PM

Updated Saturday, Oct 5 at 1:15 PM

BELLAIRE, Texas -- The shutdown is affecting countless Americans, but few more personally than a 12-year-old boy in Bellaire.

Justin Clark suffers from an incurable disease called Giant Axonal Neuropathy (GAN) and the research that could save him is now at a standstill.

Doctors diagnosed him with GAN two months ago. According to Justin’s mother, Lagenia Clark, children who have it rarely grow up.

“Some of them can never walk,” Lagenia said.

Though her son’s symptoms surfaced unusually late in life, the path from here may be inevitable. The legs weaken first, sight and hearing can go next, and patients are ultimately bedridden. Justin still wears a brace from the second of two surgeries he had on his feet.

“Both surgeries lasted four hours,” Justin said.

“We had a better opportunity to win the lottery than have Justin get GAN,” said his father, David Clark.

The family has been working with a non-profit called Hannah’s Hope Fund to fund research. This month, researchers were supposed to present to the National Institutes of Health to have them sign off on a clinical trial.

But it is not looking good.

“Because of the government shutdown, that has all been put on hold and for how long we don’t know,” Lagenia said. “Every day could be a day that a child could be dying if we don’t get this clinical trial started.”

The family is now focused on fundraising. Justin’s twin brother will soon be competing in a half-ironman to raise money for research.

Justin describes his battle “as a challenging video game.” Everyone around him is on his team.

Click here for more information on Justin’s story.

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