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 partnered with Joseph’s Goal 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.
We blog about our day to day with Mikaere – the highs and lows. We’re as transparent as we can be.
We fundraise for a future with
our son. It gives us hope when
things are tough.
We’ve partnered with Joseph’s Goal – UK’s only NKH charity. Joseph’s Goal funds 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.
of at £100,000 goal
Charity Pub Quiz
Sat Jan 20th, 2:30pm
Ranelagh Sailing Club, SW15 1LB
Get quizzical with #TeamMikaere for an afternoon of brain teasers and puzzles with our wonderful hosts Tony Conway and Tess Elford!
There will be lots of great prizes, mostly including wine and fun hampers for the winners and runners up. Teams of 8 can book an entire table at the event for £100 which can either be booked online here or contact Tony, Tess, Sam or Elly directly. If you can’t get a full team together, book a single ticket for £15 and we can organise you into a team on the day!
Wine and beer will be available at the event for a donation.
Watch this space!
Based on the success of our last wine tasting in August we’re delighted to be doing a Winter Warmers version sometime in March. With spot prizes, hampers for raffles and nibbles to go with the wine pairings and a blind tasting it’ll be a fab afternoon. Particularly with the amazing Chris Cooke running the tasting.
We’ll also have wine by the glass available after the event and you can buy bottles of the wine you’ve tasted.
Watch this space!