We’re a network of families with children who have NKH (Nonketotic Hyperglycinemia), a rare and still incurable metabolic disorder. We share information, advice and emotional support with families affected by NKH.

Welcome to the International Family Network Website

NKH International Family Network’s goal is to connect families and provide support and knowledge to anyone affected by the metabolic condition Nonketotic Hyperglycinemia (NKH) or Glycine Encephalopathy.

We offer information for those dealing with an NKH diagnosis, regardless of outcome or severity. Additionally, there are links to the ‘next steps’ – how to find more medical information about NKH, what research is happening, how to find support in the NKH Community, links to families living with NKH and how to donate/fundraise for NKH Research.

Most of all, we’re a network of families living with NKH. Have hope, you’re not alone.

Dear Newly Diagnosed Parent,

I imagine right now you’re in NICU. You’ve just been sat down and been given a diagnosis that has changed your life forever. Your doctors have probably said lots of despairing words like developmental delay and terminal and disabled and life-limiting. Nonketotic Hyperglycinemia, it’s a hard phrase to hear.

I imagine that right now you’ve been googling NKH desperate to understand what life will look like for you and your baby – will your child live? What kind of life will they have if they do? What does that future look like? Will they be able to eat and talk and walk?

Not all babies live past that first scary few weeks and if you’ve lost your baby I’m so sorry. There are no words for that kind of loss. If your baby lives, here is what I want to say about your future: there is as much love and joy and happiness in store as there is fear and grief. So have hope – the doctors aren’t always right. A lot of children with NKH eat orally. Not always whole meals, but at least part. Most children are able to communicate (though not necessarily with talking) and some of the milder children walk. Truthfully there is so much we don’t know and so much that is being learned as we go on. It may seem unbelievable, but one day soon you will be more of an expert in NKH than your doctors are. It’s the nature of having a child with a rare genetic disorder like NKH.

You’re not alone. There is a community of NKH families all over the world. We’ve all been in your position and we’re rooting for your little one, you and your family.

We’re here when you’re ready.

Elly
An NKH Mum

View the Family Map

What is NKH?

Get in touch