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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 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.

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.
4th March 2020

On the Chicken Nugget Challenge!

Well. That was A LOT harder than most people thought!! Originally we set it up…
Read More

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.

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

Upcoming Events

Help us raise funds for NKH Research

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!

More Info

Grand Hair Shave

SW London

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

SW London

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.