Meet Fiona King

This is the story of a 9-month old girl who also has GM1. She has recently become a patient in the same treatment program as Armand. Her form of GM1 is more severe than Ari’s.

The article says a lot of things I’ve been meaning to say on here, but can’t let myself type out.

Paxton and Dee King brought home their beautiful baby girl, Fiona, nine months ago. The first-time parents changed her first diaper. They smiled when the first tiny grin stretched across the face of their little black-haired bundle.

But they will never hear Fiona say mommy or daddy.

They’ll never see her take those first shaky steps. Dee will never walk Fiona to the bus on the first day of school, and Paxton will never walk his daughter down the aisle on her wedding day.

Instead, these parents will watch as their daughter slowly loses her vision. They’ll soon notice that Fiona can no longer hear their voices. The baby will stop giggling. Her arms and legs will stop moving.

And then Fiona will die, probably before she turns 2.

The simple fact is Fiona has a rare genetic disease that is already beginning to shut down her tiny body. There is no cure, no magic pill or high-tech procedure.

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