Morehead woman overcomes challenges of rare genetic disorder

Jun. 5—MOREHEAD — DesaRae Nickell of Morehead can be called a winner, in more ways than one.

The 31-year-old won the gold medal and was the first-time winner of the adaptive special needs category at National NASTAR National Champion Alpine Ski Competition in SnowMass, Colorado, during Easter weekend.

"It was a lot to take in. I was excited and I enjoyed it," Nickell said, who has a rare genetic disorder called 3q29 Syndrome, which means there is a deletion or duplication of a segment of chromosome three. She said participating in sports and other activities helps her overcome some of the challenges of the genetic disorder.

For example, Nickell has earned a black belt in karate. She also recently won the Miss Amazing Pageant in Indianapolis.

"The title on my sash says 'Kentucky Miss Amazing and Senior Miss,'" she said, explaining Kentucky doesn't have a pageant in the Miss Amazing system, so the category was created in the Indiana system.

"It was fun," she said. "I enjoyed meeting other girls there, too, because they had special needs, too."

She competed in interview, talent, for which she did a martial arts demonstration, and evening gown.

"I used to watch (pageants) all the time, but I really didn't know there was a special needs pageant out there," Nickell said. "I liked how well-spoken the girls would be on stage and how they were gracefully walking. They were very poised people, and that struck an interest with me, so when I found out about Miss Amazing ... there's not one in Kentucky, so I decided I'd go to Indiana and do it. It was exciting."

Nickell developed an interest in skiing through the Special Olympics and, with help from the Lucky Racer Junior Racing Scholarship Program, went on to win the NASTAR event.

Lucky Racer provides funding, coaching and encouragement, Kris Scherer, director and founder of Lucky Racer, said.

"The program was founded in memory of my stepfather," Scherer said. "She and another recipient of the program both brought home podium standings."

Empowerment coach Rian Valentine, provided by Lucky Racer, helped Nickell overcome her fear of the difficult terrain. "In consequence, she used her fears as strengths and conquered the course with a new sense of confidence," Scherer said.

Nickell also uses her disability to advocate for those with special needs; her input helped initiate a proclamation to bring awareness to and designating March 28 as 3q29 Syndrome Day.

(606) 326-2661 — lward@dailyindependent.com