Teen With SMA Hopes Spinraza Will Get Him Back on His Feet
Sixteen-year-old Royce Jones from Indianapolis was diagnosed with spinal muscular atrophy (SMA) type 3 at 18 months old. However, Royce has steadfastly refused to let the genetic disease stop him from doing what he wants in life. If he can’t do something the standard way, then he does it the “Royce Way,” which includes batting on his knees when he plays baseball with his friends.
According to a report in Kokomo Tribune, Royce is now in a wheelchair after he lost the ability to walk or stand when he was 13, but he can get around for a short while by walking on his knees. He and his family are hopeful that the recently FDA-approved drug Spinraza (nusinersen) will help him regain some of the muscle function he’s lost over the years.
Royce began his treatment two weeks ago, receiving his first injection of the drug at the Riley Children’s Hospital in Indianapolis. He’s cautiously optimistic about what the drug may do for him. He hopes to be able to resume the light jogging he could do before losing his lower leg function, while his mom hopes the drug will make enough of a difference in his life that he can walk across a room again.
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