Phoenix mom fights for insurance to cover teen who can't stop eating

Hannah Wilkinson has a rare condition that causes her to be hungry literally 24/7.

AVONDALE, Ariz. - 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.

PHOTOS: Teen suffers from rare genetic disorder

Treatment requires a number of specialists, but Hannah’s weight continues to be a problem.

“She has some heart problems and her heart can’t take that weight,” Coupaud said.

“Not trying to carry around all the weight that I used to have on me,” said Hannah, as she describes her goals.

280 pounds is considered obese.

But it’s much healthier than almost three years ago, when 12 News first met Hannah, interviewing her as she neared 355 pounds.

“I can’t do those things I really liked,” said Hannah, back in February 2014.

Her weight kept her from activities like the Special Olympics.

But this year she was finally able to compete again.

“I swam in Special Olympics and I won medals,” said Hannah proudly, as she showed off pictures from her big day, along with her medals.

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.

At this point, the family is looking for other options.

“I just don’t want to go back,” said Coupaud, tears welling up in her eyes.

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 in-patient facility in Pittsburgh that specializes in Prader-Willi.

United Healthcare already turned down that request multiple times, saying Hannah can be treated here in Arizona -- 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.”

As the insurance battle begins again, the family’s focus also remains on quality of life for Hannah. She wants to work with rescue animals when she grows up. Her mom wants to help her make that happen.

So she plans to fight for Hannah’s health.

“When there’s something out there that will help your child, you will do what it takes to help her,” she said.

If you are fighting a health insurance battle, Call 12 for Action. You can reach our team of volunteer investigators at 602-260-1212 every Monday - Friday from 11 a.m. - 1 p.m. You can also file your consumer complaint online here.

Copyright 2016 KPNX


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