By Chris Lane
By Jeff Balke
By Aaron Reiss
By Angelica Leicht
By Dianna Wray
By Aaron Reiss
By Camilo Smith
By Craig Malisow
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 the 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 there 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 disease a few days before he underwent two two-hour surgeries to reconstruct how his feet worked. Justin was diagnosed with a disease they'd never heard of, most of whose victims don't live beyond their 20s or 30s at most, Clark said.
At first the entire family was 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 disease. Through the organization, they also learned about a clinical trial slated to begin in December.
Justin's symptoms aren't as severe as those of most people with the disease, so he wouldn't qualify for the first phase of the trials, but his family was 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 meets only 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 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.