Local girl loses potentially life-saving treatment for neuro-muscular disease

The life-saving treatment for a local girl with a neuro-muscular disease has been rescinded by her insurance providers.

Faith Fortenberry, 5, was diagnosed with Spinal Muscular Atrophy at 17-months-old. The disease causes muscle wasting, preventing Faith from walking, standing, and doing other simple tasks by herself.

"Folks pass away from the disease 'cause their respiratory systems just can't take it,” Faith’s mother Leeann Fortenberry said. "She can't cough, we have machines that help her breathe at night."

In December 2016, the Food and Drug Administration approved the first and only treatment for SMA, a drug called Spinraza.

“We need this drug in order to save her,” she said.

On March 10, the mother said the family’s insurance companies had originally approved Faith to receive the treatment, which has helped other kids become strong enough to walk unassisted.

Spinraza costs about $750,000 for the first year, but the Fortenberry’s two insurance companies sent letters of approval. News 10 ran a story to celebrate the family’s milestone of hope.

She said, "For 3 weeks we've been on cloud nine, we were just elated."

On Friday, Faith’s mother received an unexpected call from a social worker at Cook Children’s Hospital.

"She said ‘We got some bad news, your insurance called and they changed their mind,’" Fortenberry recalled.

The Fortenberrys are upset because they say the insurance providers are going back on their word.

"You can't tell a family you'll be able to save a child's life and then say, ‘Sorry, well now you can't,’" Mrs. Fortenberry said. “We were absolutely shocked,” Faith’s father Don Fortenberry added.

He said they were told that the treatment was not a medical necessity.

"I was dumbfounded that they thought it wasn't necessary. She knows, she could walk one day, and they're gonna take that away from her. I won’t let them do that," he said.

Faith’s mother took to social media to express her disappointment, and hundreds of people shared her post. Employees at Baylor Scott & White took notice of the posting and reached out to the Fortenberrys.

Don Fortenberry said they have appealed the decision and expect to hear back next week.