One big happy family: Joy and togetherness abound at Buddy Walk
"Happy" is one word that virtually everyone there uses to describe this event, including 9-year-old social butterfly Sam Iovieno of Pittsfield, who warmed up for the walk by bounding around the Craneville Elementary School playground and bombarding his friends and family members with hugs. He also happens to have Down syndrome.
Sam was at the Buddy Walk because of, he exclaimed, "Sam's Superstars!" That's one of the 33 fundraising teams that took part in this year's walk to benefit the Down Syndrome Family Group.
Someone wondered how he feels about the Buddy Walk to which the youth replied with a gesture, using his fingers to stretch in his mouth into the biggest toothy grin his green bespectacled face would allow.
Not all Down syndrome-affected people are alike and not all can speak for themselves, like Iovieno did.
For example, 12-year-old Cole Narey of Williamstown, who experiences the affects of autism on top of having Down syndrome, meaning he doesn't talk and run around as much as Iovieno.
But he seems to enjoy having his parents, Donna and Stephen Narey, around him, along with his classmates from Williamstown Elementary School, and other relatives who joined him at Saturday's Buddy Walk. The Nareys are among the founding families of the Down Syndrome Family Group, and are actively involved with the Massachusetts Down Syndrome Congress.
"Knowing that there are so many people coming out to support people with Down syndrome is inspiring," said Cole's mother. The family, which includes two older sons, Josh and Ryan, has been to every Buddy Walk and almost every Down Syndrome Family Group meeting or event since they started.
Speaking on behalf of her son, who was wheeled on Saturday in an adolescent-sized stroller, Donna said, "He loves the activity. He's a very visual kid. Seeing all these people walking, it makes him happy."
Down syndrome is common
Like Special Olympics and Relay for Life, Buddy Walk is a trademarked event established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. In fact, members of the Wahconah Regional High School girls soccer and Mount Greylock Regional High School girls volleyball teams participated in Westfield's Buddy Walk on Saturday morning, prior to their away matches.
Down syndrome is a common genetic disorder that develops prenatally during the process of cell division and occurs when there is extra genetic material copied from chromosome 21. People who are born with Down syndrome have a distinct facial appearance with a softer muscle tone than most, and experience varying levels of intellectual and developmental delays. Down syndrome symptoms can also be compounded by things like heart disease, an autism disorder, digestion troubles or other issues.
It's a lot for one person or one family to take, which is why both medical and social support groups, in addition to advocacy and legislative lobbying groups, are critical resources for families facing Down syndrome.
One in every 700 babies born in the United States are diagnosed with Down syndrome, according to the Centers for Disease Control and Prevention. When such a diagnosis is made in Massachusetts, the majority of families are referred to the Down Syndrome Program in the Developmental Medicine Center housed at Boston Children's Hospital and Baystate Medical Genetics in Springfield.
A 'close knit group'
That's what happened just over six years ago, before Amy Perry Mercier and her husband Stephen Mercier, had their middle son, William. They have an older daughter, Katharine, and a younger son, James, who also has autism.
William was diagnosed with Down syndrome when Amy was pregnant and the couple initially went to Baystate for genetic counseling. From there, they were referred to the Berkshire County Arc Down Syndrome Family Group. The Nareys are a "first call" family, trained and ready to listen to parents whose children have just been diagnosed with Down syndrome.
So the Nareys invited the Merciers over for dinner, and later introduced them to Lynn and Aaron Robb, another Berkshire family whose first child was diagnosed with Down syndrome.
"It becomes a very close knit group because there's not very many of us," Amy Perry Mercier said. "We rely on each other for support."
She described the events that the Down Syndrome Family Group hold as being "safe" and "judgement-free," and bringing together the "nicest people."
"You can ask them questions, but you also see people going through the same thing here. There's a common bond that's almost unspoken," Perry Mercier said. "Then you see the older kids and what they're able to achieve, and though every kid is different, you think your child might be able to achieve that too."
In addition to the social and emotional support from the Down Syndrome Family Support Group, proceeds from the Buddy Walk help provide things like training and speakers for families and educators, and support picnics, outings and other assistance to help kids and adults with Down syndrome attend programs and receive services.
"A big thing of what Buddy Walk is all about is showing how people with Down syndrome are a part of our community," Perry Mercier said. "It shows my other kids that there are lots of other families exactly like ours."
Donna Narey echoed her friend's sentiment saying that she hopes passersby that saw people walking down Main Street in a sea of emerald green Buddy Walk T-shirts remember the sight and the smiles. "I hope people are impressed to see that this was an inclusive community, an open and loving community. The atmosphere — it's meant to be a fun, happy, exciting day. And everybody is there for the same reason."
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