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The Rare Reality.
Real stories from families living with Non Ketotic Hyperglycinemia.
Rare Disease Day 2026: Rare Should Never Mean Invisible
Rare Disease Day is not about pity
It is about visibility. It is about equity. It is about demanding systems that serve all children — not just the statistically convenient ones.
Feb 252 min read
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
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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