10/12/2013 - It takes a lot of courage to jump out of a plane, especially if it's your first time...
But Dustin Chandler says it's nothing like the daily obstacles his two year old daughter Carly goes through.
"We'll face the mountain and if we can't move it, we'll climb it and we're in it for the long haul."
That mountain is CDKL5 - a rare genetic disorder that approximately 700 children have worldwide.
Carly was diagnosed at eight weeks old, after suffering from constant seizures - sometimes as many as 15 a day.
Chandler says... "It's a kick in the gut, it's hard to watch. But you want to be there for your kid. But it's a pretty helpless feeling when you know there's nothing you can do."
There isn't much known about the disorder, which is why Dustin decided to bring more attention to cdkl5 by sky-diving.
"We know that Carly doesn't have a voice, so we are her voice."
"We're her biggest advocate, so it's up to us as her parents to fight for her to hopefully someday find a cure, find a treatment, and that's ultimately any parent's dream."
Now with his feet back on the ground, Dustin hopes researchers continue to reach for the sky to help find a cure for Carly
You can learn more about CDKL5 here..
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