Being Remarkable: R.I. woman moves past limitations and inspires others

Alyssa Silva with puppies Vince (left) and Wish (right). Photo by BJ Photography

Air horns, whistles and cheers ripped through the Foxborough air. Patriots fans who made the training camp pilgrimage to Gillette Stadium watched intently as their team collided with Saints players during a preseason joint practice on Aug. 9. One of those fans was Alyssa Silva from Rhode Island, sitting in a black wheelchair behind a silver and blue rope that separated fans from the practice field.

With the sun blazing overhead and a light wind wafting across the practice field, Alyssa’s dad, Phil, moved with the sun protecting his daughter from its offensive rays as she scoped out the new additions to the team. Her favorite player, Vince Wilfork, moved to the Texans two years ago so Alyssa needed a new favorite.

Three years ago, Alyssa sat in a similar spot, drinking in her first training camp. With only a few opportunities a year to take his daughter to a live game, Phil scanned the field for someone who could help him secure tickets for a preseason game. After communicating with the Patriots, he got preseason tickets to the Giants and his daughter the game experience of a lifetime.

Alyssa Silva with Patriots owner Robert Kraft at this month’s joint Saints practice on Aug. 9. Photo by Eric Adler

“We got treated like royalty,” Phil said. “There was food there and we went into our own room and watched it. It was a great experience for Alyssa for her first time to see football and the Patriots and live at a game and feel the roar of the crowd.”

Diagnosed with Spinal Muscular Atrophy [SMA] when she was five-months-old, doctors predicted that Alyssa wouldn’t live past two. The disease harms nerve cells called motor neurons which control the movement of muscles. According to the NIH U.S. National Library of Medicine, it impacts one in 6,000 to 10,000 people.

When Alyssa’s family learned of the diagnosis, they decided to live life on a day-to-day basis. They supported her in everything she wanted to do and tried to teach her all the important lessons that children learn throughout their lives.

“Those first two years, every single day was a miracle, and we always took every second and did everything we could with her,” Alyssa’s mother, Dori said. “So now looking back 26 years later, we are so blessed and so basically amazed by all she’s done with her life.”

Alyssa and Robert Kraft. Photo by Eric Adler

With her nonprofit, Working on Walking, Alyssa looks to spread awareness of her disease as well as making people’s lives better. The idea came about in the summer of 2010 and includes a golf tournament and dinner. This year, roughly 500 people attended the event. This particular fundraiser began six years ago but Alyssa has been raising money for research on SMA for the last 15 years and has donated over $200,000 to the cause.

“Just gathering the community and coming together to give back; I think that’s very important,” Alyssa said.

Three years after the nonprofit began Alyssa decided to turn up her efforts. On New Year’s Day 2013, her brother Adam floated the idea to make a documentary, “Dare to be Remarkable.” One of his lofty goals was to make Alyssa the most famous disabled person in the country. She had already thought about starting a blog and her brother figured getting her story on video was the next step. After reaching out to several people on Facebook, Adam found a friend who owned a studio interested in sharing Alyssa’s story.

“It’s very interesting to look back now and see all these events,” Adam said. “It just happened that it was a very eventful time of her life.”

Cameras caught Alyssa’s life as a student at Bryant University, where she majored in marketing, and how she navigated her academic career. They captured her graduation as well as the growth of her nonprofit’s fundraiser.

Though the documentary shows Alyssa’s daily life, it has a larger message that the 25-year-old wants to get across. She wants people to know that there is always a light at the end of the tunnel.

“The bigger message that we want to try and get across is that no matter what our circumstance in life may be, no matter what challenges we face, what obstacles we must overcome, we want everyone to know that you can always try to give [life your] all,” Alyssa said.

Alyssa with brother, Adam (bottom), his wife Krystina (top left), father Phil (middle) and mother Dori. Photo by BJ Photography

Alyssa’s blog posts have also given many people in the SMA community hope for their own lives. A couple of years ago she and her parents traveled to Washington D.C for the Cure SMA conference. While there, many families of newly diagnosed children approached them and thanked Alyssa for her blog, for making the documentary and for giving them hope for their own children’s lives.

“That kind of put [it] in perspective as to what she’s doing because I never realized it because she was a little bit of a mini celebrity,” Dori said.

“Alyssa brings hope and I think that’s what she’s all about,” Phil said. “She brings hope to other families and other kids with SMA that they too can succeed.”

She brings hope and inspiration to her own family every day for the strength that she shows them when she faces her toughest days.

“To tell you the truth, she teaches me things every day,” Dori said. “Just inner strength, I mean she’s taught me to be a better person that’s for sure.”

“You know there are days when you just have a rough day at work and you’re feeling kind of down,” Adam said. “Then I’m like, ‘You know, if I think about what Alyssa is going through right now and she still has a smile on her face and you know I think I can handle this.’”

Her work to help make her community a better place led to her receiving the Myra Kraft Community MVP award last year. Humbled by the experience, Alyssa appreciates how the Patriots have also given back to their community. For her father the team’s community work is one of the many reasons he loves the team.

“I do feel as though they are the right team because they stand for so much more than just playing a game,” he said. “They stand for hard work [and] a lot of the things Alyssa stands for. So we love our Patriots.”

Alyssa, Robert Kraft and former Patriot Vince Wilfork. Photo by David Silverman

Three years ago, Alyssa finally got to see the Patriots in action after asking her dad to take her to a game. Since that first game, her connection to the team has grown more. One year later, when the Patriots took on the Panthers during the preseason, she made her way onto the Gillette Stadium field in front of thousands of fans. Coming up to meet her was Robert Kraft who gave her his signature smile and a huge hug.

“It was very surreal,” she said chuckling. “At first I was very nervous to meet him, but he was just so outgoing, so down to earth and friendly. He made me feel so comfortable and like almost as if I had known him my entire life.”

Then she met her favorite player, Vince Wilfork. After that night, Alyssa named her newest puppy after him.

“[Mr. Kraft] pulled him aside and took him over to meet me because he was one of my favorite players at the time,” she said. “And it was so nice and it was definitely like, how could I not name my dog after him?”

Alyssa’s parents describe her as the “little engine that could” because there’s almost nothing that holds her back from her goals.

“She’s reaching people around the world and inspiring them,” Dori said. “It’s remarkable, to use the word of her documentary, it’s remarkable.”

The documentary Dare to be Remarkable premiered at the Rhode Island Film Festival on Aug. 13 and will be available online to the public in October.

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