Events to raise money/awareness of rare disorder

Davis Crow, a kindergarten student at Hokes Bluff Elementary School, has a rare condition called Dup15Q. His family hopes a pair of events on Dec. 21 will help raise awareness about the condition and money for research and assistance.Davis Crow, a kindergarten student at Hokes Bluff Elementary School, has a rare condition called Dup15Q. His family hopes a pair of events on Dec. 21 will help raise awareness about the condition and money for research and assistance.

By Donna Thornton/News Editor

The family and friends of 6-year-old Davis Crow of Hokes Bluff want you to join them in “painting the town blue” to benefit people facing the effects of a rare genetic disorder.

Davis is one of only 1,000 people in the world diagnosed with Dup15Q – meaning he has an extra 15th chromosome.

Davis’ mom Traci Ward said the condition is very rare and few people know much about it. She hopes that a Paint the Town Blue 5k Run and a Silent Auction, to be held Dec. 21, will help make people more aware of the condition, which causes low muscle tone and developmental delays in children, and sometimes other physical challenges such as seizures and autism-like characteristics.

While only 1,000 people have been diagnosed with the condition, Ward said she believes there likely are more people who have it, but have been misdiagnosed, possibly with autism.

“Davis wasn’t diagnosed until he was four and a half,” Ward said. She said he had undergone a number of tests – MRIs, CTs, etc. When he was four and a half, she said, a neurologist said “there’s got to be something else going on,” Ward recalled, and had genetic testing done.

It was the genetic test that revealed Dup15Q.

Ward said one of the challenges of Davis’ condition is that he does not feel pain, complicating dealing with any illnesses.

She said he has a sinus infection now, but when the doctor asked if he had a sore throat, all she could say was “I don’t know.”

In the fall, Ward said, they traveled to a clinic in Memphis to see doctors who specialize in conditions such as Davis’.

“It was amazing to talk to doctors who know what he has,” Ward said. She said the family has to learn how to teach Davis things as he progresses. He’s had speech, occupational and physical therapy since he was 12 months old, she said.

The 5k Run will begin at 8 a.m. at Hokes Bluff Park on Dec. 21. Pre-registration fee is $21.85 online at www.paintthetownblue.myevent.com.

On the day of the race, registration will be $28.

The second fundraising event is an auction on the evening of Dec. 21 at the Pitman Theater in Gadsden. Dinner will be catered by Morgan House and entertainment will be provided by J. Scott Thompson. Tickets are $25 ($27.10 if ordered online).

Ward said a number of items – gift certificates, TVs, lamps, and all kinds of items have been donated for the silent auction. Donations still are being accepted.

To mail donations, or ticket or race registration fees, mail to Paint the Town Blue, 670 Ward Road, Gadsden, AL 35903. Checks should be made out to Paint the Town Blue.

Ward said all money raised will do to an alliance for those affected by Dup15Q. Any donations made are tax deductible.

For more information visit www.paintthetownblue.myevent.com. Ward may be contacted by email through the web site.

 
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