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

Posted: Updated:
abc3340.com abc3340.com
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.

 

 

  • Central Alabama NewsMore>>

  • Justin Bieber arrested on assault, dangerous driving charges, according to Ontario police

    Justin Bieber arrested on assault, dangerous driving charges, according to Ontario police

    Tuesday, September 2 2014 1:42 PM EDT2014-09-02 17:42:52 GMT
    Canadian pop star Justin Bieber faces new charges after police said Tuesday he was arrested for dangerous driving and assault following a collision between a minivan and an ATV that led to a physical altercation in southwestern Ontario.More >>
    Canadian pop star Justin Bieber faces new charges after police said Tuesday he was arrested for dangerous driving and assault following a collision between a minivan and an ATV that led to a physical altercation in southwestern Ontario.
    More >>
  • Video appears to show beheading of US journalist Steven Sotloff by ISIS

    Video appears to show beheading of US journalist Steven Sotloff by ISIS

    Tuesday, September 2 2014 1:26 PM EDT2014-09-02 17:26:17 GMT
    An Internet video purports to show the beheading of U.S. journalist Steven Sotloff by the Islamic State group.More >>
    An Internet video purports to show the beheading of U.S. journalist Steven Sotloff by the Islamic State group.
    More >>
  • Halliburton reaches $1.1Billion oil spill settlement

    Halliburton reaches $1.1Billion oil spill settlement

    Tuesday, September 2 2014 10:11 AM EDT2014-09-02 14:11:01 GMT
    Halliburton says it has agreed to pay $1.1 billion to settle a substantial portion of plaintiff claims arising from the 2010 Gulf of Mexico oil spill. The settlement, which is subject to court approval, will be paid into a trust until appeals are resolved over the next two years.More >>
    Halliburton says it has agreed to pay $1.1 billion to settle a substantial portion of plaintiff claims arising from the 2010 Gulf of Mexico oil spill. The settlement, which is subject to court approval, will be paid into a trust until appeals are resolved over the next two years.
    More >>
  • Anniston - Gadsden Area NewsMore>>

  • Clean out your cabinets for Drug Take-Back Day

    Clean out your cabinets for Drug Take-Back Day

    Tuesday, September 2 2014 1:38 PM EDT2014-09-02 17:38:07 GMT
    Do you have a drawer or cabinet of medicines? Are any of them out of date? Now is the time to check because you can safely dispose of the medications at the Etowah County Prescription Drug Take-Back Day. It is part of a nationwide effort. The event will be Saturday, September 27. A take-back station will be set up at the East Gadsden Walmart from 10:00 a.m. until 2:00 p.m.A law enforcement officer will remain with the drug disposal box at all times, and the drugs that are turned in will be tr...More >>
    Do you have a drawer or cabinet of medicines? Are any of them out of date? Now is the time to check because you can safely dispose of the medications at the Etowah County Prescription Drug Take-Back Day. It is part of a nationwide effort. The event will be Saturday, September 27. A take-back station will be set up at the East Gadsden Walmart from 10:00 a.m. until 2:00 p.m.A law enforcement officer will remain with the drug disposal box at all times, and the drugs that are turned in will be tr...More >>
  • Arrest made in large level extortion scheme

    Arrest made in large level extortion scheme

    Friday, August 29 2014 12:45 PM EDT2014-08-29 16:45:16 GMT
    "Everett Leon Stout, 72 and Miriam Clair Schultz, 67 are charged with 14 counts of extortion.More >>
    "Everett Leon Stout, 72 and Miriam Clair Schultz, 67 are charged with 14 counts of extortion.More >>
  • Gadsden police recover more than 300 stolen items; felony charges against suspected fence

    Gadsden police recover more than 300 stolen items; felony charges against suspected fence

    Thursday, August 28 2014 11:22 PM EDT2014-08-29 03:22:34 GMT
    Joe Walker Pearl (Photo: Etowah County Sheriff's Office)Joe Walker Pearl (Photo: Etowah County Sheriff's Office)
    Police in Gadsden are trying to return hundreds of stolen items to their rightful owners. Captain Paul Cody said officers bust a large fencing operation this week. Joe Pearl, 75, is the suspect in the case. It took a long time to sort through and document a very wide range of stolen property. "We've collected a lot of stuff," Cody said. "Toilet paper. We have non-firearms related weapons, we have karaoke machines, musical instruments, car stereos, underwear."More >>
    Police in Gadsden are trying to return hundreds of stolen items to their rightful owners. Captain Paul Cody said officers bust a large fencing operation this week. Joe Pearl, 75, is the suspect in the case. It took a long time to sort through and document a very wide range of stolen property. "We've collected a lot of stuff," Cody said. "Toilet paper. We have non-firearms related weapons, we have karaoke machines, musical instruments, car stereos, underwear."More >>
Most Popular
Stories
Videos
loading...