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

We fundraise for a future with

our son. It gives us hope when

things are tough.

We founded The Mikaere Foundation to fund research done by Prof Nick Greene with UCL/Great Ormond St Hospital.

We truly believe that the gene therapy research being done by Nick Greene gives Mikaere, and other children with NKH the best shot at a future. We’ve got our fingers crossed and our determined faces on.

We’ve raised



of at £1,000,000 goal

Thank you to everyone who has donated, bought one of our books, bought from the store or participated in one of our events. We love you!

Donate Now

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