24th November 2024
What we’re up to… November 24, 2024 at 09:50AM
To show that most people in this corner of the internet are lovely (and cleansing…
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#teamMikaere
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 nowLatest Posts
We blog about our day to day with Mikaere – the highs and lows. We’re as transparent as we can be.
25th September 2024
What we’re up to… September 25, 2024 at 09:40PM
We went to see Kai’s glade earlier this week. Tonight my toddler asked again why…
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24th September 2024
What we’re up to… September 24, 2024 at 08:27AM
Yesterday I got a remembrance bee in honour of my boy. I miss him, I…
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