Cumberland woman first adult to test out life saving treatment

By: Liz Tufts

ltufts@abc6.com

CUMBERLAND, R.I. – 26–year–old Alyssa Silva of Cumberland is already beating the odds. At 6–months old she was diagnosed with spinal muscular atrophy, a degenerative disease that attacks the muscles. Doctors told her parents she wouldn’t live past the age of two. 

Lately her health has started declining, but a phone call last month could save her life. "Two days before Christmas it was approved by the FDA," says Alyssa Silva. 

She’s referring to the drug called SMN–RX, the first drug that could help treat SMA. Alyssa and her family pushed the FDA last year to get it fast tracked, and now it’s been approved. "To their knowledge I’m the first adult to get this drug, " explains Silva. 

Alyssa is taking part in the clinical trial at Boston Children’s Hospital. She’s getting injections into her spine that sends messages to the nerves that control muscles. "I feel the same, I try not to get too discouraged yet, they said it could take a few months if it will take effect, " says Silva. 

Her mother says they’ve been waiting for this moment their entire lives, but they have no idea if it will even work. "Her muscles have been damaged for so many years, we’re not expecting big miracles but small miracles, " says Alyssa’s mother. 

Either way, Alyssa’s journey is helping those battling the same disease, sending hope to other SMA patients all around the world. 
 
©WLNE-TV / ABC6 2017