Our Story: The Spark Behind Our Mission
Hi! We’re the Bauer Family, and our daughter Maddie is the heart behind everything we do.
Maddie has always had a spark, the kind that lights up a room and reminds everyone around her how powerful joy can be. When she was diagnosed with Very Long-Chain Acyl-CoA Dehydrogenase (VLCAD) Deficiency in 2021, our family was suddenly introduced to the reality of a rare, complex, and often misunderstood metabolic disorder. In an instant, we learned how isolating and overwhelming a rare disease diagnosis can be for families, and how urgently more research, awareness, and support are needed.
Even with the best available treatment and medical care, children like Maddie still endure frequent hospitalizations, invasive testing, hundreds of pokes, IVs, and blood draws, and an uncertain medical future. VLCAD is not a disease that pauses. It requires constant monitoring, careful planning, and lifelong management just to maintain safe energy levels.
Current therapies have supported Maddie’s journey and improved her stability, but they are not a cure. The future remains uncertain at every stage of growth as her body’s energy demands change and new risks emerge.
Our journey with VLCAD showed us that survival should not be the standard. Quality of life should be.
That realization became the inspiration for Maddie’s Spark Foundation.
About Us
Maddie’s Spark Foundation is a nonprofit corporation dedicated to raising awareness and funding research for VLCAD deficiency and related long chain fatty acid oxidation disorders (LC-FAOD). Inspired by Maddie’s bright, resilient, and unstoppable spirit, we turn personal experience into purpose by supporting research, advancing treatments, and empowering families navigating LC-FAOD.
This organization was created to change the future for children living with VLCAD. Because no child should have to fight this hard just to have the energy to live, grow, and thrive.
Maddie is the heart of our mission. Her strength fuels our advocacy. Her journey drives our commitment to research, awareness, and hope. We believe every spark of hope can fuel real progress. Until there is a cure, we will continue working toward a future where children with VLCAD and LC-FAOD can live full lives with fewer hospitalizations, less uncertainty, better treatments, and a far greater quality of life.
Maddie’s Spark Foundation is where hope meets progress — turning one child’s spark into a brighter future for all affected by VLCAD Deficiency.
