Cumberland’s Alyssa Silva featured on ESPN

Cumberland’s Alyssa Silva featured on ESPN

The story of Alyssa Silva, shown here with Patriots players Julian Edelman and Matthew Slater, was featured on ESPN Sunday.

CUMBERLAND – If you tuned in to ESPN on Super Bowl Sunday, you may have seen a familiar face: Cumberland resident Alyssa Silva, whose E:60 documentary feature aired on the network before the big game.

In the documentary, Silva shared parts of her journey living with Spinal Muscular Atrophy, and her relationship with the New England Patriots organization that has rallied to support her.

Her story is one worth telling – it’s one of strength, courage, and overall, hope to those who know her.

Silva was diagnosed with SMA Type I in 1991 at five months old, and doctors told her parents it was not likely she would live past the age of 2. SMA affects the motor nerve cells in the spinal cord, leading to muscle weakness and robbing people of their ability to walk, eat or breathe on their own.

The now 27-year-old has defied the odds and more. In addition to overcoming the daily challenges of her disease, she earned a marketing degree from Bryant University and created a nonprofit organization, Working on Walking, to raise thousands of dollars help find a cure for SMA.

Silva was approached by her friend, E:60 producer and Rhode Island native Max Brodsky, for the ESPN feature. They filmed for nine months beginning last April, documenting Silva’s life with SMA and her close-knit relationship with the New England Patriots.

“The (Patriots) organization is way more than just football,” Silva said. “They instill so much kindness in the community and it’s remarkable that they selflessly continue to spend time with their fans, like me. I’m lucky to be a part of it.”

Silva said she learned the morning of the AFC Championship that if the Patriots won the game, there was a 90 percent chance her story would air on Super Bowl Sunday.

“If I’m being honest, I truly had no words for my reaction. I was honestly shocked, while simultaneously trying not to get my hopes up in case they lost,” she said. “And for those who don’t remember that game, it was a nail biter until the very end. I had reached a new level of anxious!” she said. The Patriots beat the Jacksonville Jaguars 24-20 to secure their place – and Alyssa’s – on TV screens Super Bowl Sunday.

Though sharing the very personal details of her illness is not easy, Silva said she continues to do so because she wants to help others who are experiencing hardships.

On what she hopes people will take from her story, she said: “On the surface, I hope that people learn more about SMA and what everyday life is like and to understand a disability on a much more personal level.

“However, I hope people dig a little deeper than that. I hope they see that, despite dealing with trials and tribulations every single day, there are remarkable people in this world – friends, family, and strangers alike – who make this life a great one. And these people make a life with SMA worth every second.”

Silva remained positive in spite of the outcome of the game, just as she does in spite of her illness.

“With the Patriots losing the Super Bowl, I feel as though there is some sort of parallelism in our circumstances,” she said. “There are going to be times in life where we get kicked down and feel sorry for ourselves, but the number of times we get kicked down doesn’t hold a candle to the way pick ourselves back up.

“Like the Patriots, I’ve ‘lost’ many battles in life where I’ve felt truly sorry for myself. However, with strength and determination that is exemplified by the Patriots time and time again, I’ve learned to pick myself back up.”

There is reason for Silva to be hopeful. The Food and Drug Administration approved the first-ever treatment for SMA in December 2016. She was one of the first adults to receive Spinraza, and after a year of treatments says it has given her hope and extra strength to tackle each day. She received her seventh Spinraza injection in January and hopes to continue the upward trend.

Silva’s organization, Working on Walking, will hold its annual fundraiser for SMA on Friday, Aug. 3, at Lake Pearl in Wrentham, Mass. Last year, they were able to donate thousands of dollars to organizations dedicated to finding a cure for SMA, including a $35,000 donation to the SMA Clinic of Boston Children’s Hospital.