The Rare Reality.

Real stories from families living with Non Ketotic Hyperglycinemia.

Dimly lit hospital hallway with a blue tint, lined with closed doors and overhead lights reflecting on the shiny floor. Exit sign visible.

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

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

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