Introducing Kai

Team Mikaere is for those following the journey of Sam, Elly and Mikaere – our beautiful baby boy with Nonketotic Hyperglycinemia. NKH is a rare, terminal metabolic disorder. Treatment options are limited, and every day is precious.

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 Kai.

Donate to NKH Research

Because NKH is terminal and treatment options are limited, we’re hopeful and determined to  support the leading research done with Dr Nick Greene at UCL/Great Ormond St Hospital. If you’re able, please donate. Because NKH is so rare, every pound has a direct tangible effect on the research that can be done.

Please Donate

Recent Blog Posts

On the Christmas Carol and Triggers

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I didn’t know the story of The Christmas Carol. When a good friend suggested we go out I jumped at the chance. The last month has been *so hard*  with…

Introducing Eva

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After months of PDF proof's and double checking all the things, worrying over languages and trims and printing quality (most of which I have zero control over...) I'm pleased to...

On the eye test

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We’ve never been sure exactly what Kai can see. It sounds crazy, really, but when you meet him it becomes pretty clear. He doesn’t meet your gaze. There is no…

On feeding Kai purée when he’s nil by mouth

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Our speech and language therapist (SALT) came by last week. I like her, she’s lovely. It’s her job to assess Kai’s suck and swallow, ensuring that it’s safe for him…

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We’ve Raised




of a £100,000.00 goal

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.

Thank you to everyone who has donated, or participated in one of our events. We love you!

Upcoming Events

Kais Very First Birthday Party

Saturday 14 October 2017

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I’m a bit emotional, writing this. We were told early on that it was unlikely Kai was live as long as we’d like. The idea of him making it to his first birthday seemed impossible.

But here we are, ready to celebrate it like we’ve never celebrated before, ready to stick two fingers to NKH and love on our little miracle baby, our little warrior.

Because we’ve raised so much for NKH Research, we’re going to take a break and raise some money for Kai. For his treatments and therapies that we can’t ourselves afford out of pocket and aren’t covered on the NHS. So, instead of gifts, we’re asking help to pay for life-changing therapy for Kai.

Josie’s Running the Istanbul Marathon!

12 November, Istanbul

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Kai’s Aunty Josie is running in the Istanbul Marathon! We’re super impressed (Sam especially, after walking a marathon a day for three days, the idea of running it is CRAZY) – we’re super super proud of Josie. Grateful that she’s on #teamMikaere.

She’s been training since MAY, and (in her words): ” it has been quite a challenge! Running in 30 degree heat (I hate to complain…but!), being caught out in numerous storms, getting tear gassed, being lost for 2 hours in the back streets of Istanbul, endless hills and weaving my way through some of the 15 million people that live here in Istanbul!”

We love her, obvs.

Can you fundraise for us?

Because NKH is so rare, every single pound has a profound effect on what research can be done. Bake Sales, Raffles, a Coffee morning, a poker game… the possibilities are endless. Please help us fundraise – we’re so very keen to find treatment for Kai!

If you’re keen, let us know. x