Fifteen-year-old McKenzie Crawford is a freshman at Chattanooga Christian School. This is exam week, but class isn't necessarily where he faces his toughest tests. Just getting to school each day can be challenging.
McKenzie says "I have to get help out of bed, get dressed, and somebody has to help me get my breakfast. I have to be helped into the car."
McKenzie was diagnosed with Duchenne when he was four. It's a rare genetic disorder causing the loss of muscle to the point of the person not being able to care for themselves.
Todd Crawford, McKenzie's Father says "Watching him loose certain abilities is terrible to see as a dad, you have these expectations of what his life would be and it's going a different way."
That's why Todd was so excited when McKenzie was chosen to participate in a clinical trial last year with a new drug -- drisapersen -- giving him hope for a brighter future.
Todd gave a passionate plea. when he recently spoke before an FDA advisory committee about the impact this drug has had on McKenzie.
Todd Crawford says "The story I shared was about McKenzie breaking his leg and teenage boys who have Duchenne don't typically walk again."
But Todd says McKenzie did walk again.
Todd Crawford says "His recovery was pretty miraculous within seven weeks, he was walking 400 feet without any assistance."
Todd credits the drug with preserving McKenzie's muscle. He says the biggest impact is being seen in younger patients.
Todd Crawford says "McKenzie is one of the older boys and the drug works in the muscle and he's lost most of his muscle, so we've seen how it's helped the younger boys, running, swimming, even playing soccer."
McKenzie may not be able to play sports, but he can still be creative when it comes to arts and making things. He's also a big Star Wars fan. McKenzie is definitely aware of what FDA approval of drisapersen means not only for him, but for others who suffer from this devastating disease.
McKenzie says "It could mean walking and better health for longer."
Any hope for better health and a better future is why Todd is so passionate and on a mission.
Todd Crawford says "If the drug doesn't get approved, I'm not sure what it means for him, if they will continue to work, their is plenty of evidence the drug works."
Now they'll just have to wait and see what the FDA decides.