NKH Awareness Month: Reese’s Bright Spirit and Everyday Bravery

chanceenkhcrusader
May 27
2 min read

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.

Young Reese with curly hair and blue glasses in a wheelchair, wearing a gray sweater. Background shows people at tables in a bright room.

Life With NKH: Around-the-Clock Care

Reese depends on others for every aspect of daily life. His low muscle tone means he cannot sit up, crawl, or walk independently. He takes medication daily to keep glycine levels in check—medication that, according to his family, tastes like battery acid.

His brain is constantly firing, and because of that, he wakes every two hours through the night. It’s exhausting, but necessary. Cold season is especially dangerous. For kids like Reese, even a mild cold often demands steroids and respiratory interventions just to get through it.

Joy in the Little Things

Even in the face of NKH, Reese shines. He loves sunshine, bright colors, and music. He adores his blanket, his binky, and his big sister, who never stops talking to him and making him laugh. Their bond is powerful—sibling love is often one of the most overlooked sources of strength for NKH kids.

Reese enjoys food (he’s a delightfully messy eater!) but strongly dislikes having his face wiped afterward. His mom jokes about the ordeal of pushing his big baby head through tiny shirt holes—he makes his feelings known!

His big blue eyes and long lashes captivate everyone who meets him. Though he doesn’t communicate with words, those eyes speak volumes. There’s a whole world of story behind them.