One in fifteen-thousand children is born with this disease, but doctors fear many will never be diagnosed. The common denominator is hunger.
Mealtime at the Floyd home is no ordinary affair. The refrigerator is padlocked. The microwave and even the toaster locked. A gate bars the kitchen, all to keep a five year-old girl from eating herself to death.
"She would do anything and everything to get food of any kind," says Traci Floyd.
Cassidie Floyd has Prader-Willi syndrome. It's a genetic disorder that comes with mental delays, behavioral problems, sleep disorders, and a host of other symptoms, most notably, obesity.
Laura Porch is a Family Nurse Practitioner, who specializes in Child and Adult Neurology. She says, "Because of a malfunction, these children never feel full no matter how much they eat. (They're) always hungry."
"Literally, just tears. Bawling at us. 'I'm hungry.' And, we've just fed her," says Floyd.
Little Cassidie picks her skin until she bleeds, another symptom of Prader-Willi. Add to that an inability to feel pain.
Prader-Willi patients start life small and undernourished diagnosed with Floppy Baby syndrome. Cassidie weighed just over six pounds at birth. Her mother describes the hunger as "the monster" saying it attacked when she was three.
Tracy says, "Literally, one day she went to bed and we had fought her all day to eat. The next day she woke up starving like she hadn't eaten in years. "
Cassidie gained seventy-five pounds in three months. That's when the Floyd family started locking up the food.
Porch says, "These children - you can't rationalize with. Literally, they will become very upset because in their mind/body they are hungry. It's a physical need."
Cassidie says when mama says no she gets mad and goes to her room.
What's not locked up is put high out of reach like a bag of contraband which includes candy and even crayons.
"The one thing we do know (she'll eat that is non-edible) ate most crayons...we battle her with crayons every day," says Tracy.
Prognosis? Not good. There is no cure for Prader-Willi. Diet pills don't work, even the ADHD medication she is on doesn't affect her appetite.
"We've caught this early and with proper education, behavior modification, hopefully it will help," says Porch.
A poster with "bad foods" hangs in the kitchen. Mealtimes and menus are non-negotiable. Treats like cookies or cake are two to three times A YEAR deal.
She has to have eight hundred to a thousand calories a day. No more. If she gets much more than that she can literally kill herself, "she can eat herself to death."
Neurologists believe there may be other "Cassidies" out there; children who are obese with behavior problems, who just haven't been diagnosed.
Porch says, "If they are always hungry, if food is such an issue for them, they're going to throw a temper tantrum or a fit. Then you need to check into it."
As for Traci Floyd, she asks for compassion. She doesn't want people to assume her daughter looks a certain way because of the way she (Traci) looks.
Her message? Cassidie can't help it. This sweet five year old is prisoner to a genetic monster that robs her of her mental capacity and her muscles and holds her hostage to a hunger so extreme it will never go away.
Prader-Willi Syndrome Association
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