Insurance Cuts Off a Child Fighting for Life

Cut off from insurance, one family can barely keep its sick children alive.

ByABC News
February 12, 2009, 5:25 PM

Jan. 10, 2008— -- How do you explain to a little girl that she can't have pizza or birthday cakes, ask the parents of three-year-old Hannah Devane.

Hannah suffers from a condition called eosinophilic esophagitis that produces a severe allergic reaction that causes her white blood cells to attack her esophagus. This makes it impossible for her to eat.

Click here for more information on EE, its diagnosis and treatment.

The organization "Children's Magic" helps promote health coverage for formulas that children like Hannah need to survive.

"It's really heartbreaking." Hannah's mother Jessie Devane said.

Michael Devane, who is her father, said, "It's very difficult to tell her that she can't have a cupcake or a piece of chocolate.

There's no cure for Hannah's condition, which affects one out of 10,000 children. She has suffered from this condition since she was 11 months old and depended on a special formula called Elecare for basic nutrition. The only other foods the toddler can eat are rice and pears.

But the Devanes' health insurance company is refusing to cover the cost of Elecare because, as the company told ABC News in a statement today, it is a "food supplement."

Are you in the middle of a dispute with your employer or private health plan? Click here for a step-by-step guide to handling disputes.

Appealing decisions by Medicare?

That leaves Hannah's parents Michael and Jessie -- a police lieutenant and a registered nurse -- with a $1,200 monthly bill. Hannah's father has taken on a second job as a security guard on weekends, and the additional pay barely helps cover the expense.

To make matters worse, Hannah's 6-month-old sister has just started to show the same symptoms Hannah once had.

"Hannah needs [Elecare] to survive. And we feel that the health system should be helping us to pay to keep our daughter healthy and alive," Michael Devane said. "Her disorder is being handled by a physician. So if this is being prescribed by a physician, and a physician is telling us, 'This is what your daughter needs' --