IRONMAN dad races for daughter diagnosed with rare genetic disorder

Addie Ray is happiest when her dad is pushing her alongside competitors during a race. (Image: Chris Ray)

On Sunday, athletes will swim, bike and run across Chattanooga.

The half Ironman Chattanooga kicks off on Friday with the opening of Ironman Village.

Athletes train for months, even years for the event but one local man doesn't do it alone.

Alongside, in front of, and behind Chris Ray, is his ten year old daughter, Addie Ray.

When Addie was just a baby, Chris and his wife Michelle noticed that she wasn't developing like other children.

"We started seeing signs of failure to thrive early. When she was about 18 months old, we ran the test for Angelman Syndrome," Chris said.

The test came back positive.

"Angelman Syndrome is a rare genetic disorder typically caused by problems with a gene on the 15th chromosome called the UBE3A gene," Chris explained.

The disorder "causes Addie to have impaired motor skills, developmental delays, speech impairment, and epilepsy."

The National Organization for Rare Disorders says Angelman Syndrome affects about 1 in 12,000 - 20,000 people.

That number is not exact given that "many cases may go undiagnosed making it difficult to determine the disorder’s prevalence in the general population."

Many people haven't heard of the disorder before, something Chris and Addie are hoping to change.

"We're raising awareness through racing," Chris said.

Addie love for racing began with her mother Michelle.

Michelle "started running several years ago and completed several half marathons."

In 2013, Michelle "found this group out of Atlanta called My Team Triumph - Angels of Georgia. MTT is a nonprofit that races with people that have disabilities."

Michelle teamed up with MTT at Peter's Free Wheelin 5k in Dalton "to push Addie in that race."

"She just absolutely enjoyed it. Every minute of it she just laughed and giggled," Addie's dad says of that first race.

So, they continued from there.

In last year's IRONMAN, Chris raised $5,000 to afford a racing stroller to push Addie during running portions of a race and pull her during the biking portion.

Even though Addie doesn't communicate verbally, she bonds with her dad as they race.

"It's wonderful, it's just a great father-daughter connection. We love it," Chris said.

Other competitors love racing alongside Addie as well, "her excitement and spirit is contagious."

For just over 70 miles, Chris is Addie's legs and Addie is his spirit.

"If I'm running a long race and we're in the last couple of miles I'm starting to drag but she's getting excited because she knows the finish line is there," Chris told NewsChannel 9 on Friday.

Chris says the finish line is Addie's favorite part of a race, "she loves everybody clapping and cheering for her."

The swimming leg of the competition is another favorite of hers.

This weekend, Chris will race alone as the IRONMAN Chattanooga does not sanction him competing with Addie.

She will cheer her father on from the sidelines with her 3 sisters and mother.

For Chris and Addie, their work continues even after Chris crosses the finish line on Sunday.

"Until there's a cure there's no finish line," Chris said.

The Foundation for Angleman Syndrome Therapeutics or FAST partners with scientists around the globe to find a cure.

The group hopes to raise $2,000,000 to fund clinical trials to help find a cure.

You can donate to here to help change change the lives of "people with Angelman Syndrome and potentially related disorders like autism and Alzheimer’s."

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