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 £1,000,000 goal
NKH Chicken Nugget Challenge
Your Living Room
Chicken Nugget Challenge! How many chicken nuggets do you think you could eat? 10? 50? 100?!
We’re setting the bar high! 100, and you get each nugget sponsored by £1. If you don’t think your stomach can eat that much, there’s a second level of 50 nuggets, each sponsored at £2.
Nugget Date is 29.02.19. Sign up!
Grand Hair Shave
Elly and Gareth both have long hair, and haven’t cut it in over 5 years, minumum. That means that Elly has mermaid length hair, and Gareth looks like a homeless nomad (which: accurate). They’re going to shave it all for NKH Research (woo!)
Shave Date is 29.02.19. Donate to see Gareth shave his beard too!
Charity Art Exhibition
Toddington Methodist Hall
The Toddington and Westoning Art Group is holding their third annual charity exhibition (woohoo!) for Josephs Goal + Noah. There will be plenty of amazing paintings and art for sale and for viewing, as well as tombomla and refreshments. We’re very excited to see all the great works of art – we know this exhibition has been a long time in coming.
Charity Pub Quiz
Get quizzical with Team Mikaere for an afternoon of brain teasers and puzzles with our wonderful hosts Tony Conway and Tess Elford! Last quiz was proper hilarious and amazing and super fun, and we’re looking forward to the ridiculousness of this year’s quiz!
Hold tight for ticket info + logistics closer to July.