Our Story

Our journey began on June 2nd, 2025, while our family was on a Disney cruise. On the first night of the cruise, Madi's right arm started twitching rhythmically. We didn't think much of it that night but by morning it had increased. By the time we got Madi to the on-board doctors, her whole body was twitching. Madi was seizing and the doctors couldn't stop them, even with medication. The doctor and the ship's captain decided the best thing to do is to turn the boat around and get Madi to the nearest hospital. Jen and Madi were taken off the ship, by the Coast Guard, and rushed to St. Mary’s Medical Center in West Palm Beach. There, Madi was intubated for nine days. Getting her seizures under control was incredibly difficult. We watched our perfect, happy baby fight for her life while doctors worked tirelessly to understand what was happening. At that time, we still had no answers. The nurses and doctors who cared for Madi during those terrifying days were absolutely amazing. They loved her, fought for her, and cared for her as if she were their own. We will forever be grateful for every person who stood beside our family during those darkest moments.

After 11 days at St. Mary's, the decision was made to fly Madi by helicopter to Nicklaus Children’s Hospital in Miami in hopes of finding more answers. The team at Nicklaus performed what seemed like hundreds of tests trying to figure out why she was seizing. After 21 days in the PICU, unending questions, and unimaginable uncertainty, we learned the devastating truth. The night we returned home, we found out that our beautiful daughter had a terminal, genetic disease called Polymerase Gamma (POLG), a mitochondrial disease. We were told we didn’t know how long we would have with our girl. It could be days; it could be years. There are no words to describe what it feels like to learn that your child has a terminal disease. We were forced to live with a fear no parent should ever have to know—the fear that every day could be the day we lost our baby.

But Madi fought.

She fought harder than anyone ever should have had to. And through it all, she kept her smile. Even when this terrible disease began stealing pieces of our perfect little girl, her beautiful spirit remained. It was devastating to watch the disease take away the things she once could do so easily. It took away her ability to talk, eat, dance, and so many of the things that made her our Madi. But it could never take away who she was. It could never take away the love she gave us. It could never take away her smile.

Madi fought for exactly one year after her seizures began. On June 2, 2026, our beautiful girl passed peacefully in her mommy’s arms, with her daddy holding her hand, and went into the arms of Jesus. There is no way to explain the heartbreak of losing a child. No parent should ever have to bury their baby. We miss Madi more than words could ever express. Her big brothers miss their baby sister deeply. They adored her, protected her, loved her, and were so proud to be her brothers. Our entire family feels the space she left behind. But even though Madi’s life was far too short, the love and joy she brought into this world were immeasurable. She changed us forever. She taught us about strength, courage, love, and the beauty of finding light even in the darkest places.

Madi’s life was not defined by the disease that took her from us.

She was defined by her smile.

By her laughter.

By the way she loved her family.

By the joy she brought into every room.

By the strength she showed every single day.

And by the incredible love she left behind.

We created Madi’s Miracles in honor of our beautiful daughter and the way she touched our lives. During Madi’s illness, we experienced firsthand the fear, exhaustion, heartbreak, and uncertainty that families face during long hospital stays and some of the darkest moments of their lives. We know what it feels like to sit beside a hospital bed, to wait for answers, to pray for a miracle, and to feel completely overwhelmed. Our mission is to help local families walking through those moments. Through Madi’s Miracles, we hope to bring comfort, support, and smiles to children and families facing difficult hospital stays and unimaginable circumstances. Whether it is providing a little joy to a child in the hospital, offering support to a family who feels alone, or simply reminding someone that they are not forgotten, we want Madi’s light to continue shining.

We hope to bring smiles to many children in honor of our beautiful daughter. Because Madi brought so much love and joy into our lives. And although we would give anything to have our girl back in our arms, we are determined to make sure the love she gave us continues to reach others. Our Madi may no longer be here physically, but her smile, her love, and her light will live on forever.

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This is Madi's Miracles!

And this is how our beautiful daughter's legacy continues