Teen is youngest Dystonia patient in the Southeast

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by Lucy Bustamante, 13News

WVEC.com

Posted on October 5, 2012 at 5:48 PM

Updated Wednesday, Oct 10 at 2:37 PM

HAMPTON-Jaysen Randolph loved to play football and played it rough, which is why the parents of the then ten-year-old thought complaints of his neck twisting was a symptom of his rough housing.

On December 26, 2010, he woke up and his neck was completely contorted. He couldn't move it back into place.

Genetic tests done at Va. Commonwealth University showed Dystonia-dyt1 mutation. It makes his whole body move uncontrollably.

His parents Kisha Watkins and Jason Randolph got busy learning about Dystonia and how to treat it.

"I friended everyone on Facebook that had Dystonia," Ms. Watkins said.

It was at Dystonia and Parkinson's convention that they learned about Deep Brain Stimulation. In August, Jaysen had surgery to put a deep brain stimulator around his skull and its battery pack in his chest. The probes in his body will gradually be turned on. The electric waves will push against the electric current in his body that is forcing his movements.

It's been very effective for in Parkinson's patients. In three months, they'll know exactly how much good it has done for him.

Jaysen goes to Children's Hospital of the King's Daughters every month for maintenance care. The botox injections from neurologist Dr. Ralph Northam help to relax muscles that tense uncontrollably.

Jaysen has one goal.

"I'm hoping for it to get better so I can start playing with my brother again," he said. 

His dad can't wait to see Jaysen stand up straight again. He remembers the sleepless nights at the beginning of the mystery in 2011.

"When you're holding your child at night and you can't go to sleep because of the uncontrollable movements, you can feel it spasming and moving and you have no control over it," Randolph said.

Through it all, Jaysen  has rarely needed encouragement.  He says he still feels like himself, he just moves much more.

His mother says she feels guilty they didn't act on his symptoms sooner.

"We didn't listen and as a parent feeling that you didn't listen and we could have caught it beforehand, it really hurts," she said.

Jaysen told her, "Don't ever give up on me."

A fund is set up at SunTrust Bank under Jason Randolph: Mission for a Cure. The money goes to his treatment that has reached more than half a million dollars.

 

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