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. Justin's symptoms aren't as severe as most patients with the disease, so he wouldn't qualify for the first phase of the trials but they were hoping he'd make it into the third round, Clark said. In a disease that moves fast and kills quickly, time is everything. The board that signs off on clinical trials with the National Institutes of Health was scheduled to hear from the GAN team at this month's meeting, but the government shutdown means there won't be a meeting, Clark said.
The board only meets once a month and then there is a 30-day review period after the presentation before the board will rule on whether the trials can proceed, Clark said. Every day she and the rest of the family watch as politicians squabble and refuse to make a deal, knowing that each passing day makes means more time lost for Justin and others with the disease.
Meanwhile, Justin's twin brother, Jared, has been on a school trip to Yellowstone National Park, also closed because of the shutdown, which just adds to the frustration of their situation.
Justin, a kid who loves playing video games and building Lego robots, has been examining the shutdown with the practicality that only comes with being 12.
"Why can't they get along? Why can't they figure this out? They teach us that in kindergarten," he told his mom.
Clark told him she doesn't know. Maybe they skipped that lesson.
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