Paxton was only a few months old when his mother, Ashleigh Meyer, first sensed something wasn’t quite right. “I already had two kids, so I knew something was off,” she said. “At six months old, he wasn’t trying to sit up. He was limp and floppy.”

That motherly instinct would start a diagnostic journey taking her son to specialist after specialist for test after test. At age two, nearly 18 months after that first appointment, genetic testing finally gave the family an answer. Paxton has SDHA-related Complex II deficiency, a rare form of mitochondrial disease that causes developmental delays, muscle weakness, and respiratory issues with no available treatment or cure.

The diagnosis came from a “well-intentioned” genetics fellow who could barely contain his excitement. Paxton, he said, was “1 of only 33 patients in the world,” and the team couldn’t wait to study him. “It was almost funny,” Ashleigh said. That moment – “clinical intrigue without expertise,” she says – would set the tone for the years ahead. Her doctors were willing to help but often told her the same thing: “I’m learning about this disease with you.”

Even armed with the mitochondrial disease diagnosis, life didn’t get easier. As a toddler, Paxton began having seizures, and they’ve been part of his life ever since.

For years, outside of her family, Ashleigh largely faced Paxton’s disease alone. “I dabbled in the rare disease space, but didn’t really know where to turn,” she said.

Then, in 2025, fate intervened. A friend saw that the United Mitochondrial Disease Foundation’s Mitochondrial Medicine Conference was coming to St. Louis, just 40 minutes from her home. She immediately registered.

It was there that, for the first time, Ashleigh felt the weight she’d been carrying lift. Surrounded by people who understood her journey, she no longer had to explain. Doctors knew her son’s exact variant and referred Paxton to a local neurologist who specializes in mitochondrial care. She learned what to expect in the years ahead, including how Medicaid works and when to start planning for the transition to adulthood. She saw other children in wheelchairs, and no one stared. She made friends with other parents who “don’t look at you like you’re crazy,” she said. She also spoke directly with researchers she hadn’t known existed just days before.

Those three days at the conference showed Ashleigh how much UMDF could mean to her family. Since then, she and her family – including Paxton’s much beloved siblings Greyson, 17, and Laine, 15, along with grandparents “Nana and Boppa” – have become devoted participants in UMDF’s Energy for Life walk in St. Louis.

Today, Paxton is seven. He uses a walker and communicates about 50 words with a speech device. He receives regular physical, occupational, and speech therapy. He’s a devoted Taylor Swift fan – “TayTay,” as he calls her – and he was Buzz Lightyear for Halloween. He loves watching YouTube videos of children getting on buses using wheelchair lifts.

Caring for him has reshaped the family’s life. When fevers and seizures kept calling Ashleigh away from her job, she took a pay cut to work at Paxton’s school so she could be near him. “It’s awesome,” she said, “but it’s incredibly hard financially.”

This holiday season, your gift to UMDF can help ensure the next family doesn’t face mitochondrial disease without the support and care they need. It can connect a parent to the right doctor, prepare clinicians who have never seen mitochondrial disease, and move research closer to treatments for children like Paxton.

For now, Ashleigh’s focus is keeping Paxton’s seizures at bay and keeping him social, so he can keep learning and connecting with the people who love him. As for the future, her wish is simple. “I want Paxton to be happy and supported, and to live to his fullest potential,” she said.

We share that same desire, for Paxton and for every patient living with mitochondrial disease. You can help make that a reality by making a gift to UMDF today.