Maddy’s Story

Maddy was born a twin, alongside her sister Morgan. Over time, her family noticed she wasn’t keeping up with Morgan or reaching her milestones. Doctors found severe hearing loss, hypotonia (low muscle tone) and lower-body cerebral palsy, and she needed cranial molding. But despite years of tests and specialists, no one could find the underlying cause. Maddy was simply called “medically complex.”

Through it all, the family was grateful for the care Maddy received at Arnold Palmer Hospital, where she spent much of her short life.

On September 11, 2014, Maddy was admitted with what seemed to be a virus affecting her liver. Doctors couldn’t find the cause. She fought hard for a week before she passed away, three months before her fifth birthday.

Before Maddy died, her geneticist had suggested advanced genetic testing. “Originally we had started the testing to help our own daughter,” says her father, Tom. “After she passed away, we wanted to continue what we had started to help other children, including her twin sister.”

Eighteen months later, the results came back. Maddy had been born with Cockayne syndrome, a rare neurodegenerative disorder that had gone undetected throughout her life.

That wish to help other children is what Maddy’s Mission to Help is built on.

“Madison was a special child that touched the heart of everyone that met her. She had an amazing personality, character and unforgettable smile.” — Tom Flaherty