Family fights for $2.1 million baby treatment – NBC Chicago

A family said they had to fight for their daughter’s life after her health insurer refused coverage for a drug known as the world’s most expensive drug.

The family said doctors told them the one-time infusion that cost 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 gradually kills motor neurons, the nerve cells in the brainstem and spinal cord that control essential functions such as talking, walking, swallowing and breathing.

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

After working with a lawyer in Chicago and the NBC 5 Responds team in Dallas, the situation changed for the better.

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

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