Pelham family organizes skydiving fundraiser to help sick child

The following is posted from myfoxal.com

Posted: Sep 24, 2013 10:40 PM EDT Updated: Oct 01, 2013 10:40 PM EDT By Vanessa Araiza – email PELHAM, AL (WBRC) – If you just met two-and-a-half-year old Carly Chandler you would think she was your every day adorable toddler.

 

But if you dig deeper you’ll discover she’s battling very rare neurological disease called CDKL5.

 

“Its actual acronym is Cyclin-Dependent Kinase-Like 5,” said Carly’s mom, Amy, said.

 

Amy said there is still very little known information about the disease but a big effect from CDKL5 are seizures. At just eight weeks old Carly had up to a dozen in a day.

 

“The hardest part is the unexpected,” Amy said.

 

The disease is so rare when Carly was diagnosed two years ago she was the first known child in Alabama to have the disease.

 

Her parents knew there were more children out there like Carly but with so little information about it they wanted to do something to bring awareness.

 

“I was sitting around one day and thought what would be not your normal fundraiser,” said Carly’s Dad, Dustin.

 

He said he thrives on the adrenaline part of life so why not find a fundraiser that would do the same? So was born a skydiving fundraiser.

 

“It started off if I could find five of my friends to join me and jump out of a plane for charity raising dollars in the meantime,” Dustin said.

 

That five has grown to about two dozen people, including people like Pelham Mayor Gary Waters, police officers and first responders.

 

“It’s really just a way to show people we have the courage to jump out of a plane and there’s families that we know personally even through Facebook they have the courage to wake up every single day and live with a child with a disability,” said Dustin.

 

The charity jump will be held Saturday, Oct. 12 at 10 a.m.

 

For more information about the disease, please visit https://www.cdkl5.com/About-CDKL5/Default.aspx. If you’d like to donate to the fundraiser or join the jump, please visit http://know5.org/.

 

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