The life-saving treatment for a local girl with a neuro-muscular disease has been rescinded by her insurance providers.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