Could the NKH gene therapy help other children with NKH?

From the beginning, the Drake Rayden Foundation's mission has been bigger than one family: to raise awareness and funds for better treatment for NKH, and to care for special needs families. EmetAbba is being developed for Drake and Vivian's trial, but it targets the underlying problem that many children with NKH share.

Tarah has said she believes that if the therapy works for her children's mutation, it could also work for the large majority of the NKH population. That hope is real, but so is the science: a first-in-human trial is designed first to learn about safety and response, and results in two children can't promise results for everyone.

Still, every therapy that eventually helps many children starts with a first trial. If Drake and Vivian's trial goes forward, what doctors and researchers learn may shape what comes next for other families. Tarah often frames it this way: "Mountains CAN be moved by moving one pebble at a time…"

Families affected by NKH who want research and trial updates can contact the foundation at [email protected]. Everyone else can help lay the next pebble by giving or sharing.

Sources: Saving Drake and Vivian (GoFundMe updates)