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 Genetics Confirmation

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So, we got the letter in the mail today. There’s no surprise, Sam does indeed carry the c.1108C>A p.(Gln370Lys) mutation and I carry the c.395C>T p.(Ser132Leu)  mutation. As expected.  If I don’t think…

On Kai’s First Birthday

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Today, Kai turns one. This feels overwhelming, and I’m a bit teary.   I wish I’d known. I wish I’d known that we’d make it a year. I wish I’d…

The Garden Party

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We’re so lucky to have the kind of extended family we do. Kai’s Grandparents, Great Aunts + Uncles and Great Grandparents threw Kai a Garden Party fundraiser. It was AMAZING….

On getting in the media + podcasts with The Baby Nation Show

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You guys are great – we’re really thankful for everyone that’s on Kai’s team. Who has stopped to speak to us, who has fundraised or donated or spent time thinking…

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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