Infant receives potentially life-saving drug

Better Health & Wellness

LITTLE ROCK, Ark. (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 six months nearly 90% 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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