chanceenkhcrusader

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.