Boy With Duchenne Gets Treatment Closer to Home
Gainesville - A boy diagnosed with a rare case of Muscular Dystrophy hoped to begin treatment in Gainesville after flying to and from Ohio every week for six months.
Finally Shands workers negotiated contracts to allow the 8 year old to get treatment here in North Central Florida.
This little 8 year old boy named Evan?
"Date of birth," a nurse asked?
Evan has Duchenne, a rare case of Muscular Dystrophy. Doctors say in Florida 40 boys like Evan will get it.
"That's all I need, come on this way with me," a nurse said.
Evan and his dad, Bill, travelled to and from Ohio every week for months to get infusions that they hope would cure him.
"He's endured so much, he's endured 3 surgeries, he's endured pieces of his muscle being taken," Evan's dad bill said.
Workers at Shands negotiated with officials in Ohio.
"It took about 6 months, actually for all of the contracts to between the main site at Children's Hospital, as well as the study sponsor," Pediatric Nurse Practicioner Leeann Lawson said.
"On both arms so they can decide what vein looks best," Evan's Mom Kim Procko said.
"He's back in the community and back here in Gainesville, and continuing to receive, the study drug,"Professor of Pediatrics Dr. Barry Byrne said.
In order to make the infusion as painless as possible his mom rubs numbing cream on his arms.
And after getting blood samples its off to start the infusion, and once it stars Evan plays a video game with his older brother Bill.
Evan's dad says his clinical trial continues for the next year, they hope this infusion will help other boys like Evan beat Duchenne.
The trials are sponsored by "Serepta Therapeutics"
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