ORANGE PARK, Fla. -- An Orange Park mother must watch her baby girl's face every single minute -- all day and all night -- or her daughter could die.
Nine-month-old Cassidy has a rare genetic disorder called CCHS or congenital central hypoventilation syndrome, which means her brain doesn't tell her to breathe when she's upset or asleep. Without oxygen, Cassidy turns blue, gets stiff and has to be given emergency treatment to stay alive.
Six months ago Jeannie Blaylock featured Cassidy's story on Hero Central on First Coast News. The hope was that some heroes would step forward and help support the mother of the 9-month-old so she could sleep and find some comfort in her life.
And, sure enough, they did. One mom, Beth Rasch, saw Cassidy's story and suggested Community PedsCare, a division of Community Hospice of Northeast Florida.
Cassidy's mom, Marne, had never heard of the hospice, which provides care for children with lifelong medical issues and their families, rather than terminal care.
Community PedsCare stepped in at no charge with counseling and guidance for Marne, who prefers not to identify her last name for this story. She was able to attend support groups and meet other parents with children who also have extreme medical struggles.
Contact Community Hospice PedsCare.
It was huge to Marne, who said she's done emergency procedures on Cassidy thousands of times and admits to feeling "suicidal" about her daughter's situation.
The Hero Central story on Cassidy also made it to state Sen. Stephen Wise, who helped Marne through a tangled process to receive Medicaid payments. The payments start May 31.
Marne now has night nursing help so she can rest. She and her husband have even gone out on a date for the first time since Cassidy's birth.
Cassidy got to visit Santa three times at Christmas and most recently, she was well enough to go to Disney World. Marne said she liked the fountains there even better than Mickey!
In addition, Cassidy's mother was able to return to work at least sometimes during the week. The money enables the family to pay the bills and keep their home.
There still are struggles. Marne is worried about the Medicaid payments running out and her primary insurance company discontinuing insurance when Cassidy's bills hit the million dollar cap.
But Cassidy is making remarkable progress in the meantime. At age 4 or 5, Marne said her daughter can receive an implant to help her breathe more reliably.
Meanwhile, Cassidy cried for the first time a few weeks ago - absolutely monumental for her family.
She wasn't making any sound before then and so there was no warning when she might stop breathing. Now the normal whimper or cry of a child can alert Cassidy's parents there could be an emergency.
Hero Central is our new project with the United Way to help connect people.
First Coast News