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NKH Awareness Month: Reese’s Bright Spirit and Everyday Bravery
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.
May 272 min read


NKH Awareness Month: Honoring Aarya’s Legacy and the Gift of Four Precious Years
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.
May 202 min read


NKH Awareness Month: Celebrating Charlotte’s Strength and Unyielding Hope
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 133 min read


NKH Awareness Month: Honoring Ronan and Fueling Hope for a Cure
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...
May 64 min read


Tucker's NKH Journey: A Story of Strength, Hope, and Rare Disease Awareness
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...
Apr 303 min read
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