GRAND RAPIDS, Mich. — A local organization has started a group to help families of color who have children with Down syndrome.
“There was a need for this,” said Roshelle Seals. “All of our multiracial families get together and have a safe place.”
Seals serves as the vice president of the Down Syndrome Association of West Michigan.
Last August, she founded “21 Shades”, a peer-support group within DSAWM that meets monthly and offers resources for multiracial families impacted by the genetic disorder.
Seals’ daughter, Addison, 9, has Down syndrome. When their family first joined DSAWM, Seals says they never met people who looked like their family.
“Having a group like this was important because it gave us kind of a connection,” said Seals. “I learned that my story wasn’t the only thing and that other families were going through the same thing.”
According to the Centers for Disease Control and Prevention, Down syndrome occurs across various racial and ethnic groups, but disparities exist.
One study cited by the CDC found a lower chance of survival beyond the first year of life for Black and African American infants with Down syndrome when compared to white infants with Down syndrome, although more research is needed to understand why.
Seals says anecdotally she has observed differences between her family’s experience with Down syndrome.
“Our birth stories were much different than other families… the resources, even finding medical professionals that look like you that also understand kind of what is going on with your kid,” said Seals.
21 Shades meets on a monthly basis. Translators are brought in to help Spanish-speaking families.
“I want those in the Down syndrome community to realize that they’re loved,” said Katie Hollis, DSAWM executive director. “Even though they’re unique, they’re still special and they’re worth celebrating. Everyone else in the community, I want them to be aware of what Down syndrome is and these humans, they’re still humans and they should be celebrated and cheered on and they have a lot of different skills.”
To learn more about DSAWM or get involved, click here.