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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.

Latest Posts

We blog about our day to day with Mikaere – the highs and lows. We’re as transparent as we can be.
16th April 2018

On the Art Exhibition

Mikaere's Grandma is in an Art Group. Earlier in the year they ran an exhibition,…
Read More
9th April 2018

On the #ifhnkh Tees!

There’s an acronym that NKH parents use when we’re struggling. IFHNKH. Short for I fucking…
Read More
6th April 2018

On finally finding the right bath support

When your son can’t hold his head up, let alone sit in a bath unaided…
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 £100,000 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!

Upcoming Events

Charity Art Exhibition

Sat Mar 17th, 10:00am
Wesley Hall, Toddington Methodist Church, LU5 6BY

The Toddington and Westoning Art Group is holding a charity exhibition (woohoo!) – 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.

See you there?

Wine Tasting

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!