Nonketotic hyperglycinemia is one of the rarest metabolic disorders. MedlinePlus Genetics estimates it affects at least 1 in 76,000 people worldwide, with somewhat higher rates reported in a few regions, such as Finland.
Because so many babies with the severe form don't survive infancy, the number of children living with NKH at any time is small. The foundation has cited an estimate of about 500 living children worldwide. In 2023, Tarah noted that there were only three children with NKH in all of South Carolina, and two of them were hers.
Rarity cuts both ways. It makes every family feel isolated, and it makes NKH easy for drug companies and funders to overlook. Small patient numbers mean small markets, which is a big reason no treatment has ever been approved that addresses the root cause.
Tarah often reminds people that rare numbers are still real children: "These statistics have names… they are beautiful children that have families left behind…" Drake and Vivian are two of those names. If their story moves you, sharing it is one of the most powerful things you can do, and giving helps fund the trial.
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