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…

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