The Long Road To Care For Families Like Mine

by Margaret Demko

Imagine walking into your local urgent care with a child who has nothing more than a fever, a runny nose, or an ear infection. You are tired, worried, and just want someone to help. Now imagine being stopped before you can even check in.

“We don’t treat kids like that here. You need to take her somewhere that knows about kids with Down syndrome.”

All because a nurse sees almond-shaped eyes or hears a speech pattern they do not understand. Because your child self-stims (self-stimulation which means engaging in repetitive movements or sounds to regulate emotions, manage sensory input, or cope with stress) when overwhelmed. Suddenly, what should have been a simple visit becomes a 90-minute drive to a children’s hospital for a runny nose.

This has been our reality for 21 years.

Raising Emily: Love, Trisomy 21, and an Endless Search for Care

My daughter Emily was born with Trisomy 21, also known as Down syndrome. From the beginning, the struggle to access basic healthcare started. Although we were fortunate that she did not face major medical complications as a baby, finding someone willing to treat her became our constant challenge.

Local pediatric care was inconsistent at best and dismissive at worst. Providers questioned us unnecessarily, set unrealistic expectations, or simply recommended that we take her elsewhere. Eventually, through persistence, we found a family doctor who treated her with compassion. However, referrals to specialists were often out of reach because of distance, cost, or both.

Despite the routine screenings she should have received for thyroid concerns, diabetes, cholesterol, and PCOS, many never took place. It was not for lack of trying. It was because no one near us would accept her as a patient.

Insurance created another barrier. When I became a stay-at-home mother after being told that no daycare would take a child like Emily, we lost employer-based coverage. For years, we paid out of pocket, and very few specialists accepted self-pay patients. Access finally began to open when Emily received a Medicaid waiver at age 14.

When Everything Changed

As Emily grew, she became a bright, social, and hardworking young woman. She loved school, participated in extracurricular activities, and was excited to enter the workforce.

Then everything changed quickly and without warning.

She gained more than 50 pounds. Her skin became painfully inflamed. She pulled out her hair. Her stimming grew loud and constant. She regressed emotionally, mentally, and socially. Skills she had mastered years earlier suddenly disappeared.

Our longtime doctor had moved away. The new provider was kind but unsure how to help. Referrals fell through. The Down Syndrome Clinic that saw her as a toddler would not see her as an adult. Another clinic had a waitlist of a full year. A promising clinic was a four-hour drive and had no openings for eight months.

I felt like I was losing my daughter.

Finding Answers Across States and Airports

We finally found answers during a trip to Dallas. After speaking with Down syndrome advocates, we connected with two doctors who recognized Emily’s symptoms as consistent with Down Syndrome Regression Disorder. This condition is rarely understood and even less commonly treated.

To get her fully evaluated, we traveled to multiple locations, including:

• New Hampshire, to Dartmouth Health, for a dermatologist who specializes in adults with Down syndrome

• Cincinnati, to the Timothy Freeman Center, for primary care, mental health support, and lab work

• Many additional flights, long drives, hotel stays, and missed days of work

It was financially, emotionally, and physically exhausting. Slowly, however, Emily began returning to herself.

I know many families cannot do what we did.

A Hope That Feels New

Despite our long and difficult journey, I feel a type of hope that is new.

Families are speaking up. We are sharing our stories. We are refusing to stay quiet when doors close or when a provider says, “We don’t treat kids like that.”

Because of this collective effort, things are starting to change.

In Athens County, the opening of a Nationwide Children’s Hospital clinic felt like a small miracle. Families no longer have to take unpaid time off work and spend an entire day traveling simply to attend a basic appointment. Care is finally close to home.

I believe that bringing primary care and mental health services into schools will help even more. Early intervention should not depend on transportation, privilege, or luck. It should depend on need. Our kids, all of them, deserve access.

What Every Parent Wants

In the end, what we are fighting for is simple.

• Access

• A door that opens instead of closes

• A provider who listens instead of dismisses

• A system that sees our children for who they are, not for the diagnosis they carry

Every parent wants the same thing I do: to give their child the healthiest start possible and to support them in living a full and joyful life. My hope is that the next generation of families will not have to fight as hard or travel as far as we did.

And one day, I want, “we don’t treat kids like that here”, to be nothing more than a memory we share to show how far we have come.

About the author:

Margaret Demko is the Grant Manager for the Appalachian Children Coalition and a native of Steubenville, Ohio. She has lived in Athens County since 1993. Margaret and her daughter Emily live in Albany, where they care for several animals, including chickens and goats. She is a longtime parent advocate who served as President of the Athens County Board of Developmental Disabilities for nearly 10 years. She has also worked on disability policy in Ohio and in Washington, D.C. Margaret believes that telling your story to people who can make change is one of the most powerful tools families have.