Alyssa Silva Defies the Odds
A documentary in the works chronicles the life of a Cumberland woman who wasn't expected to survive childhood.
Alyssa Silva met with Rhode Island senators this week in Washington to advocate for more money in the fight against spinal muscular atrophy.
Courtesy of Alyssa Silva
Alyssa Silva was never expected to live beyond two years old. Diagnosed at five months with spinal muscular atrophy, her prognosis was bleak. But her doctor told her parents: “I believe in miracles.”
Twenty-three years later, Silva has graduated from Bryant College with a marketing degree and has become an advocate in the fight against SMA, the number one genetic killer of children under two years old. Her challenges and accomplishments are being chronicled in a documentary about her life called “Dare to Be Remarkable: Living With SMA.”
The disease causes muscles to wither and die. People with the condition lose the ability to move and eventually breathe. “So you have a person who is truly alert and bright, but they’re trapped in a body that won’t move,” one of Silva’s doctors says. At this point, there is no cure.
But Silva and her family have long refused to be constrained by the disease. She attended public schools in Cumberland and loves fashion and writing, blogging for the Huffington Post with pieces such as "11 Reasons Why Being in a Wheelchair is Awesome." She says her life is obviously different from that of the average person, but she tries to keep a positive attitude.
Silva, who was in Washington D.C. this week campaigning for more funding for SMA research, is hoping that the documentary will inspire others with SMA or who have faced other challenges.
“I want families to know that their loved ones who have this can succeed in life,” she says. “There’s still hope out there for them.”
She and the company working on the documentary, Animus Studios, have launched a Kickstarter campaign to fund the project. They are hoping to raise $15,000 by July 1. You can find out more about it here.