ARKANSAS (KARK) — An Arkansas infant born with a life-threatening genetic disorder has received a multi-million dollar treatment that could save her.
It’s also a big milestone since she’s the first baby in the state that had the pricey one-time injection paid for by insurance.
When Josephine Gilmore was 4-months-old, doctors found she was born with Spinal Muscular Atrophy, also known as SMA. It’s a rare genetic disorder that causes a person’s nerves to start dying before they’re born.
“How could I let this happen to my kid? Why didn’t I see the signs? But you don’t know,” says Josephine’s mom Casey Gilmore. “There’s not enough education about SMA and how horrible of a disease it is.”
The earlier doctors detect the disorder, the better the outcome. Unfortunately many times SMA is not found until a child is a few months old, and that can be too late.
“At 6 months nearly 90 percent of the motor neurons in a child’s body are dead,” Gilmore explains.
There is a gene therapy drug that can help reverse the effects of SMA. It’s a one time injection that costs around $2.1 million. Doctors call it life-saving.
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