NKH Crusaders

NKH, AKA glycine encephalopathy (GCE), is a rare, devastating, and incurable disease; with a very wide spectrum of severity. Most babies born with this disorder die shortly after birth. Before death, they go through a period of lethargy, weak crying, muscle weakness, and seizures. Many babies that are born with this disease die within the first 3 months of life. Those who do make it past infancy will live with various lifelong issues. There are several forms of NKH.