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Meet Cassidy: 2020 Family Advocacy Week Champion

Cassidy is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020.

Through this special event, Cassidy and her family will share information about her health journey, Nemours Children's Hospital’s role in providing Cassidy with necessary health care services, and why the public and our elected officials must invest in the future of kids like Cassidy. 

Cassidy’s health started out unsteady from the beginning. Suffering a cardiac arrest at birth, doctors worked quickly to stabilize her, but health concerns continued. At nearly 3 months old, Cassidy was diagnosed with congenital central hypoventilation syndrome (CCHS)—a disorder that affects the respiratory system.

“When I learned that my little girl would need a tracheostomy tube and a ventilator to help her breathe I was devastated and overwhelmed,” says Marne, Cassidy’s mother. 

Fortunately, the child specialists at Nemours Children’s Specialty Care in Jacksonville, Florida, were well equipped to treat Cassidy. “They also understand the concerns of a parent of a medically fragile child and were key components in Cassidy’s success,” says Marne. We were all partners in her care.”

Cassidy is mobile but will rely on a ventilator for the rest of her life. Her bedroom contains a ventilator and oxygen machine along with other NICU monitors.

“Prior to going anywhere, I must disassemble all of the equipment, load it into my vehicle and reinstall it all again when we arrive back home,” says Marne. “Cassidy loves to travel, so I have become quite comfortable with her care and equipment. However, I do continue to monitor for the inevitable development of cardiac issues.”

Cassidy, now 11 years old, excels in her home school lessons and plays piano, violin and guitar. She also loves to golf and cook meals for the family. As an avid computer coder, she hopes to study engineering in college. Cassidy is aware of her condition and the seriousness of it, but when asked about how she feels about living with CCHS she replies, “So what, we all have something!”


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