Piedmont mom fights for 9-year-old daughter to get potentially life-saving $13,000 drug

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PLEASANT GARDEN, N.C. -- Erin Hendricks is a mom willing to do whatever it takes to fight for her child.

Her 9-year-old daughter, Kenley, has neurofibromatosis -- a condition that causes tumors in the brain.

Over the years, Kenley’s chemotherapies seemed to work for a while, but there have been two recurrences.

“It stopped the tumor from growing, but it came back as well and that's where we are now,” Hendricks said.

Kenley’s doctor prescribed chemotherapy in a pill form because it came with fewer risks than other treatments, but insurance would not cover it.

“They were saying that she didn't have vision loss yet. That was one of the reasons for denial,” Hendricks said.

Without insurance, the family was facing an out-of-pocket expense of $13,000 a month for the medication.

The Hendricks family, with the help of Kenley’s doctor, wrote letters of appeal to the insurance company and even reached out to the drug company.

“It was constant denial after denial and we would send whatever they wanted and within 24 hours, 'No,'” Hendricks said.

Hendricks says it was frustrating not to make progress with the insurance company while a recent MRI showed Kenley’s tumor was growing.

“When the head of a pediatric oncology department says this child needs this and they can just say no repeatedly,” Hendricks added.

A breakthrough came this past Friday when Kenley’s physician learned that the treatment would be covered by insurance.

“I was happy because I was tired of them trying to fight it,” Kenley said.

Erin Hendricks is thankful but is not breathing a sigh of relief just yet.

“What if it doesn't work and we have to try another medication? Are we going to have to fight for that too?”

Hendricks is sharing her story because she doesn’t want other families in similar situations to stop pushing for potentially life-saving treatment.

“You are helpless and your child is crying, ‘Mom what are we going to do, what's going to happen to me?’ You don't have the answer and you're supposed to have the answer. Why is that OK?”

Prior to receiving approval, the family also looked into clinical trials, but either did not qualify or the trials were closed.

Kenley has started taking the drug and will continue treatment for the next 18 to 21 months.

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