Meet Patrick

“Patrick is hope to me,” his mom, Carrie, says.

Patrick and Carrie

As we gather this holiday season, we’re reminded of the importance of hope for our community – children and adults living with mitochondrial disease and the people they love most.

When Patrick Mullin was a baby, his parents noticed something felt off. He wasn’t hitting milestones. “We just thought it was developmental delays,” Carrie recalls.

Then, at age four, everything changed. One morning, Patrick woke up dragging his arm and leg. “It looked like he was having a stroke,” Carrie says. They rushed him to the hospital, desperate for answers.

Until then, Patrick’s tests – MRI and EEGs – had all been inconclusive. It was during this hospital stay that the family finally received answers from genetic testing: Patrick has Alpers syndrome, a mitochondrial disease caused by mutations in the POLG gene. His mitochondria, the body’s energy source, run, as Carrie explains, “like a battery that’s always at 18%.”

Following that metabolic stroke, Patrick lost all of his motor skills. “I remember telling the physical therapist that I wanted Patrick to walk again,” Carrie said. “She thought I was crazy. He couldn’t even hold his head up.”

And yet, Patrick walked again.

Today, Patrick is 18. He still battles seizures that strike without warning and requires constant care, medication, and monitoring. “There’s always this undercurrent of what’s going to happen next,” Carrie admits. But even through it all, Patrick’s laughter fills their home. His room is bright and colorful, reflecting the joy he brings to those around him.

He loves chocolate, slapstick comedy, and watching The Lorax, a story that holds special meaning for Carrie. Its message hangs on a canvas in their home, a daily reminder of why they keep fighting:

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

As Carrie says, “We haven’t found a cure. We don’t have a lot of treatment options. But we’ve done all the interventions along the way that I think have really led him to this place – and really a joyful life.”

Patrick’s story is extraordinary — but not unique. No family should live in constant fear of the next crisis. Thousands of children and adults with mitochondrial disease are still waiting for treatments. Still waiting for hope.

That is why your support matters so much.

Patrick

In partnership with the POLG Foundation, UMDF is also launching a new natural history study, a critical step toward developing life-changing therapies.

This progress is possible because of people like you – people who “care a whole awful lot.”

Before this year comes to a close, we invite you to fuel hope for Patrick and for every family still waiting for answers.

Your gift provides vital support to those who might otherwise feel alone.
Your gift pushes research forward, closer to treatments and cures.
Your gift could change the future for people like Patrick.

Because without you, “nothing is going to get better. It’s not.”

Answer the rallying call today. Let your compassion be the spark that keeps hope alive. Let your generosity be what turns resilience into real progress.

Make your gift to UMDF today and it will be matched, dollar for dollar, up to $25,000.

For Patrick. For Carrie. For every family still waiting for hope.

Together, we will make the future brighter.