#teamMikaere
Sharing the ups and downs of living with
Nonketotic Hyperglycinemia (NKH)

Introducing Mikaere

This is the story of Sam, Elly and Mikaere – our beautiful baby boy with Nonketotic Hyperglycinemia. NKH is a rare, terminal metabolic disorder Mikaere has inherited from Sam and Elly. Essentially, Mikaere can’t process glycine – a neurotransmitter. This causes seizures, severe developmental and learning delays and is pretty grim.

Treatment options are limited and every day is precious. We’re doing everything we can to fund a gene therapy cure for NKH. We’ve founded The Mikaere Foundation to raise funds for the NKH Research done by Dr Nick Greene as part of UCL. He’s currently the world leader in NKH research, and we’re determined to give the research team the best shot at finding a cure for NKH.

Donate to NKH Research

We support the leading research done with Dr Nick Greene at UCL/Great Ormond St Hospital. Because NKH is so rare, every pound has a direct tangible effect on the research that can be done.

Please help us fund a cure for NKH.

Donate now

Latest Posts

We blog about our day to day with Mikaere – the highs and lows. We’re as transparent as we can be.