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Montana mom fights to destigmatize Down syndrome

Posted at 9:33 PM, Oct 04, 2019
and last updated 2019-10-05 00:00:25-04
KALISPELL —

When mom and registered nurse Sarah Reynolds gave birth to her daughter, Lilli, she knew there was something not quite right.

"It was very apparent to me, almost immediately, after birth that there was something going on, and my heart said she has Down syndrome," Reynolds said.

Testing confirmed that Lilli had Down syndrome.

"People with Down syndrome have low tone or hypotonia, and so that would be like muscles are kind of like Play-Doh," Reynolds said. "You know, they're just very soft and weak. And you can condition them and train them, but they always have this low tone."

All of these physical differences stem from an extra chromosome found in Lilli's genetics.

Reynolds says she took action to destigmatize Down syndrome and started the Kalispell chapter of the Montana Down Syndrome Association.

She'll walk in this weekend's Buddy Walk. Those who walk show their support for those with Down Syndrome.

"It was less than 30 years ago people with Down syndrome were still put in institutions, and so we're not very far away from that," Reynolds said. "And so, changing the idealism and the stigmatism behind that they're incapable and unable to do things is our goal."

Aside from a few developmental delays, Lilli is a healthy 5-year-old girl.

For the first four years, Lilli was relatively non-verbal and used sign language to communicate.

Of course, Reynolds still has regular fears any mom would have.

"I encourage her to go and to make friends and to play with others at parks. There's always that underlying fear in in my heart somebody is going to say something mean to her, somebody is going to hurt her, somebody is not going to include her," Reynolds said. "And that's just a fact of life for all of us, a little more blatant when you're perceived disability is visible," explained Reynolds.

The buddy walk is Sunday at KidsSport Center in Kalispell.

According to Reynolds, more than 300 people have signed up.

Reynolds recommends people https://www.ds-stride.org/flatheadbuddywalk , but they can also register at the door Sunday morning.