20th November 2024
What we’re up to… November 20, 2024 at 10:00AM
On this day, 20 Nov 2016. The grief is really heavy today. #nonketoticHyperglycinemia #glycineencephalopathy #raredisease…
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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 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
£252,152.85
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
Latest Posts
We blog about our day to day with Mikaere – the highs and lows. We’re as transparent as we can be.
18th November 2024
What we’re up to… November 18, 2024 at 07:00PM
On this day 18 Nov 2016. Today we had a photographer from 'Remember my baby'…
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17th November 2024
What we’re up to… November 17, 2024 at 08:00PM
On this day, 17.11.2016. There are significantly less photos now that he's at home. I…
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