Supporting families with children who have Nonketotic Hyperglycinemia

Raising awareness, connecting families, bringing hope and building futures.

What is Nonketotic Hyperglycinemia (NKH)?

Nonketotic Hyperglycinemia (NKH) is a metabolic disorder in children which prevents their little bodies from processing glycine.

NKH usually affects infants and children, appearing shortly after birth. It is a genetic disorder and is inherited from both parents.

There is a wide range of severities with NKH, as the individual mutations affect the child’s quality of life. Some children have very severe NKH. As such they have complex medical needs and can have severe¬†developmentally delay. They may require support sitting, eating and breathing. Some children are more attenuated (mild). They might be able to walk for short distances and have behavioural difficulties. One or two very attenuated children may even graduate from a mainstream high school.

In the same manner there are a range of severities, there is also a range of life expectancies. Unfortunately NKH is considered terminal. Some children won’t see life past their first few weeks. Some won’t see their fifth birthday. However, the oldest person living with NKH is in his 40s, so this isn’t always the case.

Read more about NKH