Pelham couple holds skydiving fundraiser to raise awareness - ABC 33/40 - Birmingham News, Weather, Sports

Pelham couple holds skydiving fundraiser to raise awareness to daughter's rare disorder

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Cullman, Alabama -
One child a day is now being born with a rare neurological disorder that wasn't even discovered until around 10 years ago. The genetic disorder was called CDKL5, and currently there are only 700 people worldwide battling the debilitating medical condition, including Pelham's 2-year-old Carly Chandler.

In an effort to raise awareness to CDKL5, little Carly's parents -- Amy and Dustin Chandler -- organized a adrenaline-filled, skydiving fundraiser Saturday. Along calling attention to the disorder, the couple hopes to collect monetary donations to be used for testing babies and continued medical research.

Currently there is no cure for CDKL5, and research into prevention and treatments is in its early stages. 

The Chandler family decided love knows no bounds, hence their idea to skydive for little Carly.  "I love Carly. I love everyone with CDKL-5," Dustin Chandler said.

His love for his daughter, who is unable to walk, talk or feed herself due to the disorder, has driven him to face his fears head-on and do something he has never done before -- jump from a perfectly good airplane flying thousands of feet in the sky.

"They are developmentally delayed, mentally delayed," Amy Chandler said about the effects of CDKL5 on her daughter. "They have vision impairment. The seizures themselves are the worst part of the disorder."

Joining Chandler in the leap for Carly was nine Pelham police officers, Pelham Mayor Gary Waters and an Arizona father with a child battling CDKL5.

The Dixie Divas also joined the Chandler family by biking to the airport.

"We only had 15 bikes here today but this was only the first time. We're going to do it again."
 
When you love your child, the sky is the limit, or maybe the sky is where you realize love has no limits.  

Dustin Chandler equated facing your worst fears with facing a scary diagnosis. "You got to face your fears. You have to have courage to face everyday. These kids have disabilities and these kids, especially our wives that take care of them everyday." Amy Chambers, agreed, "It makes us feel so good. It makes us feel like we're not alone."

Money raised will be donated to the International Foundation for CDKL5 research, a non-profit organization that supports research for a cure. The Chandlers would like five people to tell five people about it, then ask each person to donate $5. If you'd like to help, go to
www.know5.org or call 205-690-0803.

 

 

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