For those born with Fragile X syndrome, the most common inherited cause of intellectual disabilities and autism, such an experience would be hard for them to imagine.
"Our son Andy could not play hockey," said Katie Clapp, President and Co-Founder of FRAXA Research Foundation. "He has let me put skates on his feet a few times, and that's about it."
Andy was born with Fragile X. FRAXA Research is a nonprofit organization supporting scientific research for treating and ultimately finding a cure for Fragile X.
On Thursday, May 28, Boston Bruins Foundation Executive Direction Bob Sweeney pledged a $90,000 donation to FRAXA over the next two years, serving as one of the largest donations in the foundation's 21-year history. The check was presented to Clapp and Co-Founder Michael Tranfaglia, and will enable the organization to fund an entirely new research project aimed at developing new treatments for Fragile X.
The presentation took place at Shared Living Collaborative’s Gateway Farm in Merrimac, Mass., which features a farm and equestrian-based program that serves children and adults with Fragile X, autism and many other disabilities.
The peaceful setting with a stable full of horses, other animals like donkeys and goats, crops, gardens and areas outdoors provides work for those it serves, while also providing a therapeutic environment. Sometimes it's easier for them to learn through animals instead of people. Often times, children with autism have sensory integration difficulties.
Observing the bright smiles on the kids' and adults' faces with Sweeney and the Bruins mascot Blades around, and the big Black & Gold Bruins vehicle parked by the barn, it became easier to make a comparison between their lifestyles, and those of, say, professional hockey players.
"There's a sense of community here," said Clapp.
The kids and adults worked together as a team, day in and day out, to take care of the animals and have a sense of connection to both the animals and each other, and as a result, other people, something that does not come easily for them.
"Whether it's watching hockey or learning how to ride a horse or taking care of the horses that your riding, whether it's growing the food that you're going to then feed those horses - all of those things are ways of making people feel empowered and bringing out the best in them," Clapp said. "And I've really seen a lot of positive improvement in [my son] Andy over the past couple of years."
"So this event is another example, just everybody's smiling faces out there, all the kids and all the adults were so thrilled to see that Bruins vehicle and the mascot and Bob Sweeney, and I think that they're excited about being part of something big and knowing that it will help fund more research is really a bonus."
While a cure for Fragile X is sought after, environments like the farm provide an opportunity for them to have enhanced lives.
So, how did the Bruins get involved with such a cause that is not well known?
There are many reasons. The Bruins Foundation is no stranger to championing causes and charities that need more awareness, like Progeria. It also has worked closely with other adaptive programs and therapeutic animal and horse programs.
"A lot of these kids, they don't really open up, it's hard for them," said Sweeney. "So they feel confident on a horse and it makes them feel relaxed."
"When they get involved in different types of therapy, whether it's through riding horses or whatever, they come out of their shells, so to speak, so it's interesting and it's good to see a kid that normally might be very shy tends to open up after he's at a facility like this."
It's also close to Sweeney, whose son has a close high school friend, Preston Hall, who has Fragile X and is able to play hockey. Preston, smiling from ear to ear, was on hand for the event.
"When I was approached by FRAXA for this opportunity, it made sense," said Sweeney. "There are so many different organizations that can use funding, but FRAXA is an organization that I believe strongly in and I think, as you could see, I think the work that they do is amazing."
As Daniela Morse, Executive Director of the Shared Living Collaborative, gave a tour of the farm, she explained that everything there was maintained by the children and adults, working and living in the Merrimac community. She referenced a video about Fragile X that included Co-Founder Katie Clapp talking about her son, Andy.
"In that video, there's a point - and it gives me goosebumps each time - where Katie says, "What I wish for my son, is just for him to walk away and say, 'Goodbye, Mom! I'm gonna be OK now.' And I could just start crying when I think about that," said Morse. "Cecause it's such a profound moment and we are trying to, together, create those opportunities for Andy and other children. And that's what we're striving to do."
Jim Vershbow, who was on hand for the presentation, knows firsthand how Fragile X affects a child or adult. His son, Patrick, is 22 and living with Fragile X. He and his wife started a 3-on-3 basketball tournament to benefit the FRAXA Research Foundation, which is taking place for the 19th time this weekend (May 30).
When Patrick was born, the resources and funding weren't there. FRAXA Research has helped change that.
"The day that Patrick was diagnosed, I can remember it as clear as a bell," said Vershbow. "My wife, she immediately drove to the library, because the internet wasn't all that big of a thing back in '93 and she had to go through a number of encyclopedias or books to find one small little paragraph about Fragile X, that was it."
"So we started at a spot where we were like, oh what are we going to do? No one knows about it..So it's gone from that, to not where it's a normal thing pediatricians check for and knowledge is off the charts in comparison. I'm happy for families today, they're not going to be taken by surprise."
"The problem is, how do you enable kids and adults with Fragile X and autism and other disorders that are similar to that - how do you enable them to really enjoy their lives and be productive?" said Clapp. "And we are working to fund research to understand Fragile X and come up with treatments and have made a lot of progress in the past 20 years."
"But at the same time, you can see that with the right environment and the right challenges, the right jobs in a place like this, just how much people can do, even if they do suffer from Fragile X."
The grants from the Bruins Foundation will pay dividends moving forward for the organization, but the platform for awareness will help FRAXA even more.
"One of the things, when we sat down with Katie from FRAXA, was awareness, that they want to try and create more public awareness," said Sweeney. "And later on this year, they're going to be a 50/50 Raffle recipient and as you're well aware, when we do the 50/50 for every home game, it's an opportunity for the charity to tell the people during a Bruins game what their charity's all about, and hopefully they can raise additional funds for their organization."