Government Shutdown Gets Personal For One Houston Kid

Photo contributed by the Clark Family
Justin Clark, 12, with his twin brother Jared. The shutdown is slowing down approval of the clinical trial that could help Justin and others suffering from Giant Axonal Neuropathy.

For most of us the government shutdown is a bad joke that seems like it will never end, but for 12-year-old Justin Clark and his family, the shutdown that has frozen the works of federal government is a lot closer to a very unfunny hostage situation.

Two months ago Justin was diagnosed with Giant Axonal Neuropathy, a disease so rare there are only about 50 known cases in the world. Justin's parents had noticed their son seemed to be on the clumsy side from a young age. He tripped a lot and had a little trouble with his motor skills, but it was nothing that seemed out of the ordinary until they noticed he was having trouble walking, Lagenia Clark, his mom, said.

His walk kept getting worse as the tendons and structure of his feet deteriorated. The doctors diagnosed him with GAN's disease a few days before he underwent two four-hour surgeries to reconstruct how his feet worked. Justin was diagnosed with a disease they'd never heard of where most patients don't live beyond their 20s or 30s, at most, Clark said.

At first, the entire family was just in shock, but soon they decided to do something about it. Clark connected with Hannah's Hope, a national organization promoting awareness and research about GAN's disease. Through the organization, they also learned about a clinical trial slated to begin in December.

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