Health Check: Woman raises awareness of SMA
CUMBERLAND, R.I. —
A 23-year-old woman from Cumberland is making a name for herself while raising awareness about a rare form of muscular dystrophy.
The type she has is almost always fatal in childhood. Her story is providing hope, and so is the money she's raising.
Alyssa Silva graduated in the class of 2013 from Bryant University. And after 13 years, she has turned her WOW Productions in to a nonprofit organization.
WOW is an acronym for Working on Walking, something Alyssa would someday like to do. WOW Productions is all about raising money and awareness about her disease, spinal muscular atrophy.
"SMA is a genetic motor neuron disease that affects all muscles, including head and neck control, walking, crawling, breathing," Alyssa said.
"We started noticing it at four months of age," said Dori Silva, Alyssa's mother. "She wasn't rolling, she wasn't crawling."
Within a month came the heart wrenching diagnosis.
"The doctors told my parents I would live at most two years. I'm 23 now so I beat the odds on that," Alyssa said.
And she continues to amaze. Under the umbrella of WOW, she holds annual fundraisers every August. She designs and sells greeting cards, and she's working on a documentary.
"She's done remarkable. Her campaign is Dare to be Remarkable right now, that every child with SMA can do something with their lives," said Phil Silva, Alyssa's father.
Alyssa also writes a blog with inspirational headlines like "I have SMA. SMA doesn't have me."
The blog made her a sort of rock star in SMA circles. She found that out during a recent trip to Washington, where she met with local lawmakers while attending an SMA conference in Maryland.
"The first time it happened we were in the elevator of the hotel and someone looked at her and said, 'You're Alyssa Silva.' Whether we were in a shop or out at breakfast, parents coming up to her and saying thank you so much for your blog, for your words because this is such a hopeless disease, but you are giving me hope," Dori said.
"I realize how blessed I am to still be doing so well and I feel I need to give back to other people who need the hope and inspiration," Alyssa said.
Alyssa's Dare to be Remarkable campaign is actually a documentary she's working on, and she's in the midst of planning her upcoming fifth annual SMA fundraiser at Twin River in Lincoln in August.