Local man chosen for clinical trial to treat rare Niemann-Pick disease

Randy Clark will be flying to, from California for next 6 months

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JACKSONVILLE, Fla. – A local man is one of 12 people in the world who was chosen to take part in a clinical trial to help treat an extremely rare disease.

The outcome could be life-changing.

Randy Clark, better known as "Bubba D," is always smiling, laughing and singing. Judging by his character, you’d never know the challenges he faces every day.

The 20-year-old took his first plane ride a few weeks ago, setting off for California. Now he’s going to be taking trips back and forth for the next six months as he takes part in a clinical trial to treat something he’s been dealing with for years: Niemann-Pick disease.

Around age 13, Clark started showing symptoms. It took doctors almost seven years to diagnose him.

“His primary doctors didn’t even know about the disease -- never heard about it before,” said Amanda Clark, Randy Clark's sister.

Niemann-Pick disease is an extremely rare, degenerative disease that affects one in every 150,000 people. Symptoms include tremors, clumsiness and difficulty swallowing, speaking, walking and moving the eyes. 

So far, Randy Clark has had one infusion of the drug that’s supposed to help improve his quality of life.

“We noticed with the first infusion, his speech was better,” said Carol Clark, Randy Clark’s mother. “He had a really difficult time talking. He had been aspirating a lot. We hadn’t seen any of that since the first infusion, so that is promising.”

The hardest part of it all is being away from his family. Clark is getting back into town Feb. 28.

A benefit is planned in his honor at Dalton’s Sports Grill in Middleburg. It’s set for Sunday, March 3 from noon to 6 p.m.

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