PHOENIX, Arizona (KPNX) – Hannah Wilkinson is more than just a hungry child. She’s 16 years old and 280 pounds.
“Everything is locked up in our home. Even the bread box has a lock on it,” said Tonya Coupaud, Hannah’s mother, who has caught her daughter eating from the trash and even eating dog food.
These food-seeking behaviors are part of Hannah’s Prader-Willi Syndrome.
“Just imagine if you were hungry all the time, 24/7 and couldn’t eat and even if you did eat, you’re still starving,” said her mom.
Prader-Willi Syndrome, as described by the Prader-Willi Syndrome Association, is a complex genetic disorder affecting appetite, growth, metabolism, cognitive function and behavior.
Anyone can be born with it and there is no cure.
The family found some success for Hannah’s health by getting her involved in a case study, testing a medication that helped with weight loss and behavior control.
“It was just amazing and she lost close to 80 pounds,” her mom said about the study.
But the study unexpectedly ended and there are no plans for it to resume.
Tonya says Hannah’s doctors do the best they can.
“They just do not know enough about Prader-Willi Syndrome,” said Coupaud.
So, she will fight once again to send Hannah to a one-of-a-kind facility that specializes in Prader-Willi.
United Healthcare turned down that request multiple times, saying Hannah can be treated at home — but she wouldn’t have access to the specialized care.
So Coupaud will try again.
“We won’t stop,” she said. “We won’t stop.”
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