NBC 5 Responds

Family Fights For $2.1 Million Treatment for Baby

Spinal muscular atrophy (SMA) progressively kills motor neurons that control essential functions like talking, walking, swallowing and breathing.

NBC Universal, Inc.

A family said they faced a fight for their daughter’s life after her health plan provider denied coverage of a medication known as the most expensive drug in the world. NBC 5 Responds’ Lisa Parker has the story.

A family said they faced a fight for their daughter’s life after her health plan provider denied coverage of a medication known as the most expensive drug in the world.

The family said doctors told them the one-time infusion that costs more than $2 million was their daughter’s best hope.

Aniya Porter was born with a rare genetic disease called spinal muscular atrophy (SMA).

SMA progressively kills motor neurons, the nerve cells in the brain stem and spinal cord that control essential functions like talking, walking, swallowing and breathing.

The disease is degenerative. Aniya’s parents, Will Porter and Hailey Weihs, said every day that went by without the $2.1 million dollar treatment meant Aniya could lose more of those essential life functions.

After working with an attorney in Chicago, and the NBC 5 Responds team in Dallas, the situation took a turn for the better.

To read the full story, and to learn more about the treatment, click here.

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