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The Rare Reality.

Real stories from families living with Non Ketotic Hyperglycinemia.

image of an IV pump and bag hanging in hospital room

image of an IV pump and bag hanging in hospital room

Medical PTSD: When the Fight Doesn’t End After the Hospital

When your child is diagnosed with NKH or any long term illness or cancer, your nervous system doesn’t get a choice. You’re thrown into survival mode.

Feb 123 min read

A pendant embossed with tiny gold baby feet and a heart in the center

A pendant embossed with tiny gold baby feet and a heart in the center

Twenty-Eight Years Later, My Body Still Remembers

On the 12th, it will be 28 years since we went through the gut-wrenching process of delivery with no happy ending.

Feb 103 min read

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