Four years ago, Sarah Reynolds gave birth to a beautiful little girl named Lilliauna. In the months before Lilliauna was born, there were no indications that Reynolds’ daughter would be anything but a perfectly healthy child. But once Lilliauna was born, Reynolds, a nurse at Kalispell Regional Healthcare, was surprised to learn that her new daughter had Down syndrome.
Down syndrome occurs when a child is born with an extra chromosome. A child with the genetic disorder often has muscle development issues and can struggle developmentally. According to the National Down Syndrome Society, about 6,000 babies are born with the disorder annually in the United States.
Needless to say, the diagnosis was intimidating to Reynolds.
“There was this fear of the unknown,” Reynolds said. “Even as a medical professional, I had so many questions.”
Now Reynolds and others are looking to start a local chapter of the Montana Down Syndrome Association to help answer those many questions for families impacted by the genetic disorder. To help launch that effort, Reynolds is helping organize the Flathead Valley Buddy Walk in Kalispell’s Lawrence Park on Oct. 14.
The Montana Down Syndrome Association was established in 2014 and is currently based in Missoula. President Philip Yasenak said the association’s goal is to raise awareness through events like the Buddy Walk and offer aid and services to families. The association has a lending library where local families can borrow material and medical devices. It also holds workshops, and in some cases offers financial assistance for therapeutic services and medical expenses.
Yasenak, who has an 8-year-old son with Down syndrome, said the group and its chapters also give families emotional support.
“It’s very helpful meeting with other parents who are dealing with the same issues as you are,” he said. “Montana is so spread out, and so having local chapters will help parents and families meet face to face.”
Reynolds said talking to other parents of children with Down syndrome is helpful. She said the last four years have turned into an incredible journey, and despite Lilliauna’s challenges, she has developed into a bright and beautiful young girl. Lilliauna goes to physical and speech therapy weekly and can currently communicate in full sentences using a combination of words and signs.
“These kids are strong, resilient and remarkable,” she said. “These kids are fighters and they never quit.”
The Buddy Walk will be held at Lawrence Park in Kalispell on Oct. 14. Registration is at 10 a.m., and the walk is at 11 a.m. After the walk, there will be food and drinks, as well as raffles to raise funds for future events. Amy Cannon, another organizer whose granddaughter has Down syndrome, said the event would be a great way for people to meet new friends and share their experiences.
Reynolds said it’s unclear when a local chapter of the Montana Down Syndrome Association will be established in Kalispell. But when it does, she said, it will be great to have the opportunity to commune with others in similar situations.
“(Lilliauna) has taught me more about myself than I ever could have imagined,” she said. “There have been some challenges, but it’s been an amazing journey.”
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