What is the life expectancy for a child with NKH?

There's no single answer. Life expectancy with nonketotic hyperglycinemia depends on the form of the disease, the specific genetic variants, and each child's medical complications. Severe NKH is often life-threatening in the first weeks or months of life, frequently because of breathing problems. The foundation has shared the sobering estimate that roughly four out of five children with NKH don't reach their first birthday.

Some children with severe NKH do live much longer, usually with round-the-clock care, while children with the attenuated form generally have a more hopeful outlook. Infections, breathing crises, and seizures remain constant risks.

Drake and Vivian's parents were once told to expect weeks to months, and later three to five years. In October 2026 Drake turned 10, and Vivian is 7. Their family would tell you every one of those days has been a gift, and also a fight.

That fight is why the gene therapy matters so much. It is a first-in-human trial with no guarantees, but it's the first real chance to address NKH at its root. Help Drake and Vivian get to the trial.

Sources: MedlinePlus Genetics: Nonketotic hyperglycinemia · GeneReviews (NCBI): Nonketotic Hyperglycinemia