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The Rare Reality.
Real stories from families living with Non Ketotic Hyperglycinemia.
NKH Families Invited to Participate in International Rare Disease Survey
The NKH community has been invited to take part in an important international initiative focused on amplifying the voices of patients and caregivers living with rare brain signaling-related disorders — including NKH.
Mar 21 min read
Rare Disease Day 2026: What It Really Means for Families Living With NKH
What does Rare Disease Day mean to you? It has so much meaning to me. It hits personal. Some years on this day, I am filled with hope. Some years on this day, I am tired. Tired of fighting for what our children need, but then I think of all the rare disease warriors who fight to live and breathe, and I remember my why!!
Feb 282 min read
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
From NICU to Two Years Strong: Thaddeus’ Journey with Non Ketotic Hyperglycinemia
My son Thaddeus was born February 10th 2024. What should have been the happiest moment of life, became a nightmare.
Newborn Thaddeus in the NICU
After 12 days of watching my child never cry, never open his eyes and need ventilator support we had our diagnosis, Non Ketotic Hyperglycinema. From that moment life changed, but I'm here to share our story and offer hope.
Feb 202 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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