Des Moines moms raise Down Syndrome awareness through podcast
By Savannah Lee
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WINDSOR HEIGHTS, Iowa (KCCI) — October marks Down Syndrome Awareness Month, a time to recognize the estimated half-million Americans living with Down syndrome and highlight the importance of inclusion.
In the Des Moines area, two mothers are working to change the way people view the diagnosis, one conversation at a time.
Amber Robinson and Patty Sneddon-Kisting are the mothers of 9-year-olds Addie and Pierce, who share more than their age and the experience of growing up with two siblings. Both children have Down syndrome, a genetic condition caused by an extra copy of chromosome 21.
But their diagnosis is only one part of who they are.
“They are amazing, resilient, wonderful pains in the butts,” Sneddon-Kisting said.
For Robinson and Sneddon-Kisting, a Down syndrome diagnosis introduced them to a community they had not previously known existed.
The two met at GiGi’s Playhouse in Windsor Heights, a nonprofit organization that provides free educational and therapeutic programs for individuals with Down syndrome and their families.
The nonprofit is a place where families can find support, share challenges and connect with others navigating similar experiences.
“It’s really a place for us just to come and share the hard that comes with it,” Robinson said. “It’s just really been a safety net for us and our family to know that we’re not alone in this.”
That sense of community inspired the two mothers to expand their support system beyond the walls of GiGi’s Playhouse.
They launched the podcast “Chromosomes & Chaos” to give families and listeners a place to find relatability in the unknown and realize they are not alone in their experiences.
The podcast explores the realities of family life and raising children with Down syndrome, embracing both the challenges and the moments worth celebrating.
“We want to be open and let people feel their feelings and have a resource where they can come to share the good that comes with Down syndrome and not always the bad,” Robinson said.
“Everybody has something to navigate,” Sneddon-Kisting said. “I think that’s the beauty of bringing something like our podcast to social media, is that people can say, ‘Oh, I’m not weird.’”
After just one year, “Chromosomes & Chaos” has accumulated thousands of downloads, reaching listeners through honest conversations about parenting, relationships and the craziness of everyday life.
“We encourage people to just live in the moment and give a lot of grace and keep going,” Sneddon-Kisting said.
They also hope to change how people respond when a family receives a Down syndrome diagnosis.
“When somebody says they got a diagnosis, say congratulations,” Sneddon-Kisting said. “Feel the feelings, navigate those feelings; feelings are valid, but say congratulations.”
For Addie, Pierce and their families, Down syndrome is part of their story, but it does not define the whole picture.
Through GiGi’s Playhouse and “Chromosomes & Chaos,” Robinson and Sneddon-Kisting are helping build a community that recognizes the challenges while celebrating the people, personalities and love that make up everyday life.
Listeners can find “Chromosomes & Chaos” on podcast platforms. More information about programs and opportunities to get involved with GiGi’s Playhouse Des Moines is available at gigisplayhouse.org/desmoines.
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