Family by Fate: The McDonald family turning barriers into bridges

When Michelle and Chris McDonald welcomed their son Liam, they never imagined how profoundly their lives would change—or how determined they would become to change the lives of others. Liam was diagnosed with Kleefstra syndrome at two-and-a-half years-old after months of unanswered questions and specialist referrals. What followed was a journey marked by grit, sacrifice, and a fierce commitment to building a better future not only for Liam, but for other families facing the same challenges.

Early on, access to therapies was a constant battle. In Texas, the McDonalds contacted more than 30 providers—only to be turned away again and again because Liam didn’t have the “right” diagnosis. The turning point came when the family connected with a speech therapist in Nashville. That spark of hope led to one enormous decision: uprooting their entire lives and moving to Tennessee, where Chris had secured a job. It was a leap of faith that reshaped their family’s trajectory.

In Tennessee, the McDonalds finally found the coordinated, compassionate care Liam needed. Today, Liam is thriving in his own unique way. He attends a specialized classroom where he receives individualized support, including speech, occupational, and physical therapy built into his school day. Liam loves using his talker to communicate, and he’s making steady progress with new words and skills. Outside the classroom, he enjoys adaptive sports and music.

From exhaustion to empowerment

However, the hardships of those early years fueled a deep fire in Michelle: no family should have to fight this hard for care.

That passion led to one of the most significant Kleefstra-related policy wins to date: Michelle helped pass legislation in Tennessee improving support and services for children with Kleefstra syndrome. The process required countless emails, calls, hearings, and meetings—but she refused to quit.

“Liam’s condition is not who he is. And he deserves every opportunity,” said Michelle.

Her next goal is even bigger: expanding insurance coverage for rare-disease therapies nationwide. She has already begun advocating for policy changes that would allow children with rare disorders—whether or not they have an autism diagnosis—to receive medically necessary services without hitting arbitrary caps or denials.

This year, the McDonalds also launched a new nonprofit: Run With Liam, a 501(c)(3) dedicated to covering costs for families who need therapies, medical care, or specialized programs they cannot access or afford. Instead of giving money directly to families, the organization will pay providers—covering deposits, medical appointments, travel-based services, and more.

Her motivation is simple: “If they need us, we’re here. We want to help.”

The nonprofit’s first fundraiser—a community car wash—has already kicked things off, with more events planned to support families who are stuck due to insurance barriers or Medicaid restrictions.

Partners in research

The McDonalds have also become steadfast contributors to research led by IDefine and partner institutions. Liam recently provided both blood and skin samples to help advance scientific understanding of Kleefstra syndrome as part of the Natural History Study for Kleefstra syndrome at Boston Children’s Hospital.

“We try to provide as much as we can,” Chris says. “It’s the only way researchers are going to find answers.”

Finding community through IDefine

Though their advocacy is tireless, the McDonalds say one of their greatest sources of strength is the community they found through IDefine. After first attending a Southern Roots event and meeting other KS families in person, they finally felt what had been missing for years: connection, acceptance, and understanding.

“It feels like family,” Michelle says. “When Liam lays on the floor or takes his shoes off, nobody cares. They get it. You don’t feel judged.”

At the 2024 conference in Boston, the experience came full circle. From participating in research to connecting with new families, the McDonalds saw firsthand how much progress has been made since their early, overwhelming days.

Connecting in person also gave the broader Kleefstra community a chance to get to know Liam and for him to make new friends. Liam’s joy for the iconic travel stop Buc-ee’s is legendary. Whether it’s the beaver mascot, the snacks, or the endless energy, Buc-ee’s lights him up like nothing else. He’s so enthusiastic, in fact, that many families in the Kleefstra community affectionately know him as “Buc-ee’s Liam.”

To those just beginning their Kleefstra journey, the McDonalds offer encouragement born from experience:

“Every child’s journey is unique. Don’t compare. Start early with therapies, push for what your child needs, and give them every chance possible. These kids will surprise you every day.”

Watch an interview with the McDonald family from the 2024 North American Kleefstra Syndrome Family Conference.