The Buddy Walk in 2022 at Stanley Park in Westfield supported national efforts to support individuals with Down syndrome and their families.
Reminder Publishing submitted photo
Sue deVillier of Agawam and Laurie Houle Isham of Hampden met 25 years ago, after their youngest daughters were born with a genetic disorder called Down syndrome. Like many mothers in their situation, they were looking for information and resources.
“We met for lunch one day, Sue with her infant daughter Kristina, and me with my daughter Adriana, who was a toddler, along with both our older daughters,” said Houle Isham.
Reminder Publishing submitted photo
The two mothers bonded over their shared experience. They also decided to attend the National Down Syndrome Congress Convention in Washington, D.C., in the summer of 1999. After going to a workshop about organizing local groups to help support families who had children with Down syndrome, they formed the Down Syndrome Resource Group of Western Massachusetts that September.
“We both realized there was very limited support for families,” said deVillier. “Laurie, a social worker, was much more connected than I was and had tons of ideas. When we started, we had no money, but lots of grand ideas. Laurie would tell me her plans, and somehow the banker in me would make the budget work.”
Initially serving about 20 families, the group that deVillier and Houle Isham founded now has more than 200 families. But its mission still remains the same: to discover and embrace the potential of individuals with Down syndrome. To celebrate the 25th anniversary of the Western Massachusetts group’s founding, deVillier and Houle Isham will serve as grand marshals for its annual Buddy Walk in Westfield on Oct. 5.
“While our finances were very limited when we started, we did secure funding through the Department of Developmental Services [DDS] and grants through the Federation for Children with Special Needs [FCSN],” said Houle Isham.
She said the friendships and the camaraderie among other parents who had a child with Down syndrome was the common denominator.
“We learned from each other, supported each other and mentored each other,” she said. “Although family and friends can be well meaning, parents with children with special needs got it. They knew what the journey of walking in our shoes was like.”
DeVillier said many see those with Down syndrome as “sweet and heartwarming” people who are often forgotten about.
“There are many different levels and abilities within the diagnosis,” she said. “Over the years, I’ve heard from many parents who felt alone and betrayed by the school systems or the public in general. The DSRG was created to be that space that anyone could go to get the support, encouragement and wisdom from people who live it every day and who have gone through the challenges.”
Reminder Publishing photo by Mike Lydick
Houle Isham said when Adriana was born, it quickly became apparent that she would have to educate herself and her family to achieve the greatest outcome for her daughter.
“I had to educate myself on special education laws, medical decisions, transition to adulthood, special needs trusts, etc. One time I heard that with children you can get away with being a mediocre parent, but having a child with special needs mandates you had to be an exceptional parent,” Houle Isham said.
DeVillier said when Kristina was born, there were just three books on her condition at local libraries.
“Many families had no idea of the resources available — and if you didn’t put the effort in yourself, you were left in the cold,” deVillier said. “That’s what we wanted to change.”
As their daughters got older, deVillier and Houle Isham handed the group over to new and younger parents to carry on the support and new information available to families.
“As life evolved with Adriana, Down syndrome became just a part of our life,” said Houle Isham.
Now 27, Houle Isham’s daughter attends Berkshire Music Academy in South Hadley.
“It’s an accomplishment that has made the fabric of our family that much more diverse,” Houle Isham said. “I’m proud of Adriana’s independence and ability to have a full life.”
Kristina has become “a bright, funny young lady” who is 26 but looks 14, deVillier said.
“She goes to the Viability program in Springfield and volunteers at many events. Kristina is super social and is part of the Special Olympics Westfield team,” deVillier said.
The Down Syndrome Resource Group of Western Massachusetts is run entirely by volunteers who support and create a community for individuals with Down syndrome and their families. The annual Buddy Walk is an advocacy initiative launched in 1995 by the National Down Syndrome Society, and is one of its biggest fundraisers.
The walk serves to generate significant awareness and understanding of Down syndrome while simultaneously raising critical funds to support local programs and services offered by the local resource group. Down syndrome is a genetic disorder caused by an extra copy of chromosome 21. It affects intellectual and physical development and can cause health problems.
“The DSRG’s Buddy Walk gives our community, family, friends and business sponsors an opportunity to come together to celebrate our loved ones with Down syndrome and raise funds for the programming that supports them,” said John Leckey, the group’s treasurer.
He said the fundraising goal is $50,000, with a portion of all proceeds going to the national organization to support advocacy initiatives to improve the quality of life of individuals with Down syndrome.
Programs and activities supported by money raised through the Buddy Walk include the First Call program for newborns; playgroups for toddlers and school age children; social groups for teens and adults; social events for families; scholarships for recreation and education; film presentations; and cutting edge research presentations.
Joan Leckey, president of the Down Syndrome Resource Group of Western Massachusetts, said the group hopes to have 600 people participate in the 2024 Buddy Walk.
“Participation dwindled significantly during COVID-19, so we’re hoping the trend will reverse itself this year,” she said.
The walk will take place Saturday, Oct. 5, at Stanley Park, 400 Western Ave., Westfield. Registration opens at 10 a.m., with the walk beginning at 11 a.m. For more information and to register, visit charity.pledgeit.org/dsrgwm.
