Maddy's Legacy Lives On
The Flaherty Family keeps their daughter’s memory alive by raising funds to support technologies and treatments for children like Maddy at Arnold Palmer Hospital.
Maddy was a twin to her sister Morgan Brooke. Over time, her family noticed that she could not keep up with her sister and was not meeting her expected milestones. Maddy had severe hearing loss, required cranial molding, suffered from hypotonia and had lower body cerebral palsy.
After undergoing extensive testing and numerous visits to specialists, Maddy remained undiagnosed and was considered “medically complex.” Being undiagnosed and developmentally delayed caused a variety of challenges for Maddy and her family, but through it all they remained grateful for the care she was receiving at Arnold Palmer Hospital.
Maddy spent most of her short life in and out of hospitals in order to receive the treatment and support she needed. She made progress at her own pace but always in a positive direction.
Unfortunately, Maddy unexpectedly went into the hospital on September 11, 2014 with what appeared to be a virus that had shut down her liver. None of the prescribed tests could identify the cause. Her internal organs began to shut down one by one until she passed away a week later after putting up a strong fight. She was three months away from her fifth birthday.
“Prior to her death, our geneticist suggested we undergo some advanced testing in hopes that we could determine what her underlying condition was,” shares Tom Flaherty, Maddy’s father. “Our geneticist and her team were kind, comforting and guided us through the whole process. She explained that this type of testing was relatively new but extremely extensive and detailed.”
“Originally we had started the testing to help our own daughter,” Tom adds. “After she passed away we wanted to continue what we had started to help other children, including her twin sister Morgan.”
Eighteen months after Maddy passed away the Flahertys received the results of her blood tests. They were shocked and amazed to learn that she had passed away due to the complications of a syndrome called Cockayne’s Syndrome – condition she was born with but due to its extreme rarity, they were not able to identify it until later.
“Madison was a special child that touched the heart of everyone that met her,” Tom reflects. “She had an amazing personality, character and unforgettable smile.”
Learn more at MaddysMissiontoHelp.org.
