(NBC) - An Arizona teen is suffering from a genetic disorder that causes her to be constantly hungry.
16-year-old Hannah Wilkinson is living with the disorder called Prader-Willi syndrome.
Prader-Willi syndrome is a complex genetic disorder affecting appetite, growth, metabolism, cognitive function and behavior.
Anyone can be born with the syndrome and there is no cure, but treatment requires a number of specialists.
Tonya Coupaud, Hannah's mother, said, "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".
Hannah's weight is continuing to be a problem, weighing 280 pounds.
"She has some heart problems and her heart can't take that weight," said Coupaud.
The family found some success for Hannah 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," said Coupaud.
However, the study unexpectedly ended and there are no plans for it to resume, leaving the family looking for other options.
Tonya will fight once again to send Hannah to a one-of-kind in-patient facility in Pittsburgh that specializes in Prader-Willi.
United Healthcare already turned down that request multiple times, saying Hannah can be treated in her hometown but she wouldn't have access to the specialized care.
Tonya will keep trying.
"When there's something out there that will help your child, you will do what it takes," said Coupaud.
Tonya just started a new job so, the family hopes that private insurance combined with Hannah's Medicaid could lead to a different outcome.
