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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.
20th February 2018

On the standing frame

It turns out your hip sockets aren't fully formed at birth. They're flat and somewhere…
Read More
31st January 2018

On Mikaere’s path at Mikaere’s pace

It’s been a while since I’ve seen our friends with babies. My NCT friends have…
Read More
26th January 2018

On the gastro!

The day after I posted about the previous gastro attempt we got a letter in…
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 or participated in one of our events. We love you!

Upcoming Events

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.

Get Tickets

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!