The Sweet Labor of Love

March 15, 2022 

Every March, the Down syndrome community honors World Down Syndrome Awareness Day on March 21 (3/21). As part of LuMind IDSC’s “Raise Your Hand” for World Down Syndrome Day initiative, we highlight Kim Warren, a mother, fundraiser, and former board member of LuMind IDSC, who is now a key member of our Community Engagement team.

Kim lives in Fayetteville Arkansas, with her husband Bill, an EMS helicopter pilot, and their three daughters. The Warrens’ introduction into the world of Down syndrome started when their middle daughter Sydney was born.

Today, Sydney is a thriving 16-year-old high school sophomore interested in making cupcakes, participating in races as a member of the Achilles running club, and spending time with her sisters Paige, a high school senior, and Zoe, who is in seventh grade. Kim brings her family’s lived experience to her work as the Content Editor for myDSC, the online membership platform operated by LuMind IDSC and offered at no cost to anyone searching for reliable Down syndrome resources.

We sat down with Kim to talk about her drive to make high-quality Down syndrome resources available to more families.

Finding a Down syndrome expert can be hard depending on where you live. The Warrens have been fortunate to have a pediatrician in their town who had adopted a daughter with Down syndrome. This helped the pediatrician to stay up to date on the needs of children with Down syndrome. For specialty Down syndrome care, for a few years, they used journey to a Down syndrome clinic in Kansas City, located nearly four hours away from their hometown.

For closer options, Kim says that only recently, an adult Down syndrome clinic opened in Little Rock, which is still three hours away from our home in Fayetteville, “but we keep that as an option,” Kim pointed out.

As Sydney ages, the Warrens are one of many families who will face important decisions when it comes to a loved one’s medical care. Receiving medical attention from a Down syndrome specialist often involves some level of travel from a family home. The same situation often applies to participation in a clinical study or trial – that extra step of traveling can be a difficult barrier.

In their same state, only Arkansas Children’s Hospital is involved in some Down syndrome-related research. According to Kim, “research is not as available and not a whole lot is done in this area. We only have that one hospital that does a few studies in Kansas City, which is not exactly close. The number of clinical trials or studies are nothing like they do in the Northeast. Local organizations focus on younger children, they do involve some of the older kids, but families outgrow them.”

For Kim, Alzheimer’s disease is a personal matter; her dad passed away from the condition only 3 years ago.

When Sydney was little, Kim was president of one of the local Down syndrome organizations.

Kim distinctly recalls an event that would change her approach to Alzheimer’s disease for good: “I remember this lady calling, she had a son who was 21 years old, and he had been diagnosed with late stages of Alzheimer’s disease. The mother was trying to find a clinic that could help her and her son. All we could do was refer her to Kansas City. Now looking back, it was probably regression, but I remember being shocked at how early they could get it. That’s what clicked it for me.”

Back when Sydney was still very young, Kim couldn’t fathom dealing with another medical condition, especially one that would come too far into the future. “When they’re early ages you don’t focus on research until it affects you.”

At the Down syndrome organization, “We’d get information about Alzheimer’s disease, and we would be hesitant about handing out that information to the families because when you have a younger kid, you have enough going on with all the medical stuff. But now, the older Sydney is getting, I realize that it’s inevitable. If we can get involved and get the research going and discover a cure, that would help all the families who have already gone through so much.”

In honor of World Down Syndrome Day, Kim is leading two fundraisers, including an online campaign to support LuMind IDSC’s mission to accelerate research that will benefit people with Down syndrome.

At home in Arkansas, Kim will have another fundraiser along with Sydney: baking and selling cupcakes. The proceeds will go towards Down syndrome research.

Kim and Sydney are planning to open a bakery once Sydney graduates from high school. Their plan is to hire employees with Down syndrome. (And by just looking at those cupcakes, we know that Sydney will be a great baker and a successful entrepreneur!)

To donate to Kim and Sydney’s fundraiser, follow this link!