When you have a child with Nonketotic hyperglycinemia, isolation becomes part of daily life. NKH is rare enough that most people I encounter have never heard of it, let alone understand what it means to live it every day. Friends and family try to relate, but the truth is they cannot fully grasp the weight of this diagnosis and, honestly, I am grateful they do not have to. That is why the NKH Crusaders Conference matters so deeply. There is something profoundly different abou

We are honored to announce the Audrey Tribe Memorial Scholarship — awarding $1,000 to an NKH family attending the 2026 NKH Crusaders Conference for the first time. Read Jeanne’s heartfelt letter about Audrey’s legacy and the inspiration behind this gift.

The difficult and often misdirected path to diagnosis The daily realities of managing severe symptoms like intractable seizures, low muscle tone, developmental delays, and feeding challenges The emotional and physical toll NKH takes on the entire family The urgent need for safer, more effective treatments and the willingness of our community to participate in clinical trials

This is Reese. He’s 2 years old and lives with Non-Ketotic Hyperglycinemia (NKH)—a rare genetic disorder that requires full-time care and constant vigilance. Despite the many challenges NKH brings, Reese is full of life, light, and love.

When Aarya came into the world, our lives were turned upside down. Maurice and I were just 18, full of hope and excitement to meet our baby girl after a picture-perfect pregnancy. But on December 2, 2018, everything changed.

Just days after she was born, Charlotte began showing signs that something wasn’t right. She was unusually sleepy, had a floppy tone, and wouldn’t eat. We went to the doctor multiple times, but it wasn’t until she was finally admitted to the hospital that things escalated—and fast. She ended up in the NICU, intubated and fighting for her life. That’s when we learned she was having seizures.

May is NKH Awareness Month—a time that means the world to our family. I'm Angie, Ronan's mom, and every year this month brings a mix of...

The Day Tucker Was Born Tucker was born August 9, 2024. He came out screaming like any other baby, and we were overjoyed. But as the days...

List of known NKH Research Publications

When I was pregnant with Braylynn, everything was perfect. No complications, no warning signs—just the joy and anticipation of welcoming our

Maggie Jack was born like any other baby—beautiful and full of promise. But within hours, something wasn’t right. She began having seizures

A Journey of Hope, Heartache, and Resilience Sixteen years ago, on April 2, 2008, our world changed forever. Brodyn entered this world...

Rare Disease Day is a time to shed light on the challenges faced by individuals and families battling rare conditions. Today, we share...

A Devastating Diagnosis Becoming a mother again should have been a moment of pure joy. But when my daughter, Nora Jane , was born on July...

February is Rare Disease Awareness Month, a time to shine a light on conditions like Nonketotic Hyperglycinemia (NKH)