Tennessee Mom’s Five-Year Fight Leads to Historic Kleefstra Syndrome Coverage

For Michelle McDonald, the journey to ensure her son Liam received the care he deserved was a long one—five years of phone calls, rejections, legislative roadblocks, and unwavering determination. But in the end, her persistence paid off: Tennessee has passed legislation – going into effect July 1 – that ensures coverage for Kleefstra syndrome under TennCare, recognizing it alongside conditions like autism spectrum disorder and Down syndrome.

The new law, an amendment to Tennessee Code Annotated Titles 56 and 71, authorizes TennCare to cover diagnosis (including genetic testing) and treatment for Kleefstra syndrome when medically necessary. For the McDonald’s and other families like theirs, the impact is transformative.

From frustration to advocacy

The bill was born out of frustration. “I was exhausted from hearing that if Liam needed services, he had to be diagnosed with autism,” McDonald said. Insurance providers had capped essential therapies—occupational, physical, and speech—to just 20 hours per year, regardless of her son’s needs. “That’s not nearly enough for a child with complex needs like his.”

Liam’s Kleefstra syndrome diagnosis came through expensive, specialized genetic testing. Though he exhibited symptoms similar to other conditions—joyful like a child with Angelman, physical traits resembling Down syndrome, white matter brain irregularities seen in cerebral palsy—none of the existing labels fit. What he had was Kleefstra syndrome, a rare genetic condition with overlapping features that often go unrecognized in traditional care frameworks.

“The problem,” said McDonald, “is that so many children are forced into an autism diagnosis just to access services. That’s not just unfair—it’s harmful. It dilutes resources meant for kids who genuinely have autism and fails to meet the actual needs of children with other rare disorders.”

A grassroots legislative push

McDonald’s advocacy picked up steam thanks to a key connection: her husband Chris’s role with the Dickson Fire Department. Through the fire chief, she was introduced to a local state representative who took up the cause and organized a pivotal meeting at the state capitol. There, McDonald found herself at a table with leaders from TennCare, Medicaid, and the Department of Intellectual and Developmental Disabilities.

“That was the first time we were truly heard,” she said. With the state representative’s help, McDonald began working on legislation that would recognize Kleefstra syndrome as a medically eligible condition in its own right. “It took years, but it laid the groundwork for real, systemic change.”

A win for the rare disease community

The new law means that Tennessee families no longer have to pursue an autism diagnosis just to access therapies. “Our kids can

now be seen and treated for what they actually have,” said McDonald. “It honors their diagnosis and ensures they aren’t overlooked just because they’re rare.”

McDonald also emphasizes that the fight for awareness is just as critical. Thanks to her efforts, Tennessee now observes Kleefstra Syndrome Awareness Day on September 17, and local support has grown exponentially: purple lights at the Dickson Fire Department, custom uniforms, community events, and proclamations from city and county officials.

“This kind of recognition doesn’t just raise awareness—it builds community,” she said. “It creates the connections that lead to change.”

Advice for other advocates

To others in the Kleefstra community considering similar efforts, McDonald has this advice: “You may have to apply, be denied, and push through rejection, but don’t stop. Every time you show up, every time you share your story, you build momentum.”

Even if a bill doesn’t pass right away, she says, every step helps raise awareness—and awareness drives action.

“Someone once fought hard for autism to be recognized, and now it opens doors for care. But that label doesn’t fit everyone. We’re fighting so that kids with Kleefstra don’t have to carry a diagnosis they don’t truly have just to get basic services.”

Through her tireless work, Michelle McDonald has changed not only her son’s future, but the lives of every child in Tennessee living with Kleefstra syndrome. And she’s far from finished.