For more than a decade, the annual Missoula Buddy Walk, which raises money for families dealing with Down syndrome, has provided a gathering point for families.
But families need parent-to-parent support more than once a year, said Sarah Mulligan, who has two children with Down syndrome.
To address the need, several parents are pulling together to form the Montana Down Syndrome Association, which they say they hope eventually will connect families across the state.
Parent Jessie Crowley has experienced the power of peer support firsthand.
People with Down syndrome, a genetic condition, have an extra chromosome, giving them 47 instead of the usual 46. Down syndrome comes with increased risk for heart issues as well as other medical issues, and causes developmental delays.
When her son was born with Down syndrome, the unknowns of how to provide him with the best care were daunting, Crowley said. But insight from another family with a child with Down syndrome helped Crowley and her husband understand the condition beyond the medical terminology.
“It really gave us a sense of peace where we were feeling a little overwhelmed before,” Crowley said.
The Montana Down Syndrome Association will continue the tradition of the Buddy Walk as well as provide peer support for families with children from birth to adulthood.
“It’s not that you struggle just when the baby’s born. It’s all the way through,” Mulligan said.
Families need support dealing with finding doctors, learning about services, social activities and other day-to-day issues that arise.
“We know what we want, but as an individual it’s not easy to think about how to do that,” Mulligan said.
When children are born, the group would provide information and support to new parents. The new group also will be an outlet for sharing current research, she added.