Ezra's Energy Warriors Fundraiser

Before most families wake up, Ezra’s day has already begun.

At just 20 months old, Ezra lives by the clock—not by choice, but by necessity. Every few hours, day and night, his body needs fuel. Miss a window, and his tiny system can’t keep up. There are no shortcuts, no “just this once,” no sleeping through the night. For children like Ezra living with VLCAD, every hour matters.

VLCAD—very long-chain acyl-CoA dehydrogenase deficiency—is a rare metabolic disorder that prevents the body from turning certain fats into energy. What sounds technical becomes very real, very fast. It means frequent hospitalizations. It means the constant threat of liver disease and dangerous heart complications. It means that even when everything is done perfectly, children like Ezra can still face sudden, terrifying episodes of rhabdomyolysis—where muscle tissue breaks down—and life-threatening metabolic crises.

And yet, Ezra is a warrior.

He smiles. He plays. He fights through more in a day than most of us will ever have to face. Behind that smile is a family navigating an around-the-clock regimen—measuring, timing, monitoring—doing everything possible to keep him safe, knowing it still might not be enough.

But there is hope.

A cure is not just a dream—it’s within reach. Researchers, including the dedicated team led by Dr. Jerry Vockley at UPMC, are working toward life-changing treatments for VLCAD and related long-chain fatty acid disorders. The science is moving forward. The breakthroughs are possible.

What’s missing is time—and funding.

Without the resources to support clinical trials, progress slows to a crawl. Years turn into decades. And children like Ezra don’t have decades to wait.

This fundraiser is about changing that.

About this fundraiser

Maddie’s Spark Foundation is a parent-led nonprofit organization created by families of children living with Very Long-Chain Acyl-CoA Dehydrogenase (VLCAD) Deficiency. United by shared experiences, challenges, and hope, our mission is to accelerate life-changing research and bring us closer to a cure.

We are proud to partner with UPMC Children's Hospital Foundation to directly support groundbreaking research led by Dr. Jerry Vockley at UPMC Children's Hospital of Pittsburgh.