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$2.1 million drug approved for Pearland toddler with rare genetic disease – KHOU.com

October 21st, 2019 10:43 am

PEARLAND, Texas A 2-year-old whose family has been fighting for a $2 million drug to battle her rare disease received approval for the drug Friday.

Krista James has Spinal Muscular Atrophy, or SMA, a life-threatening condition that severely impacts kids muscle movements. Her family has been fighting for the toddler to receive Zolgensma, a cutting-edge gene therapy that treats the disease at the genetic level.

RELATED: Pearland family fighting to get $2.1 million drug for toddler with rare genetic disease

Zolgensma is the most expensive drug to ever receive FDA approval. The treatment is priced at $2.125 million.

Despite Kristas doctor telling Medicaid its what the toddler needs, the request for coverage was denied until Friday, which happened to be Kristas 2nd birthday. Texas Health and Human Services approved the family's appeal.

The family told KHOU 11 they are beyond blessed and considered the approval the best birthday present ever.

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