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 Birthday Bash

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Oh my days. OH MY DAYS. We’ve just spent the weekend up with Sam’s folks. Their friends from church were having a few milestone birthdays and were throwing a birthday…

On figuring out the stupid seizures

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I feel like we’re constantly holding back the tide with our hands. The seizures are unrelenting, and oh how I loathe them. They’re so horrid.  Here’s the thing – there…

On another week, another hospital visit

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This time we managed about six weeks between hospital visits – some kind of record for us! It’s always the small things that get us here, which I think is…

On fundraising with supermarkets

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Waitrose has a local community charity campaign... where every month they give £1000 split between three local charities. A while a go I picked up a form from the welcome...
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We’ve Raised

£25,426.63

Title

25.42%

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 Dr Nick Greene with UCL/Great Ormond St Hospital.

Upcoming Events

#teamMikaere Charity Wine Tasting

Saturday 12 August, 3.15pm

Get Tickets

When: Saturday 12 August, 4pm
Where: Ranelagh Sailing Club, Putney, SW15 1LB

We’re so lucky to know and love a clever Irish gent who works in wine. He’s very kindly agreed to run a wine tasting evening for us, we’re so excited (also, if you know us you know how much we like wine!!).

So, fab wine tasting. £5 to book your spot and donate what you think it was worth on the day. There will also be a raffle hamper, and spot prizes. Looking forward to it!

x

#teamMikaere Garden Party

Sunday 17 September,1:30 – 5pm

When: Sunday 17 September, 1:30pm – 5pm
Where: Midway House, Toddington

Kai’s Grandparents + Great Aunts are throwing him a garden party! There will be all sorts of stalls (plants, art, fresh produce, cake, bric-a-brac), fun garden games, tombola and a hamper raffle!

Very much looking forward to it, it’s going to be fab!

x

Sam’s walking 75 miles for NKH!

Friday 22  – Sunday 24 September

When: Friday 22 – Sunday 24 of September
Where: The Thames Path

 

Sam, and a few people from BV will be walking 75 miles along the Thames Path across three days for #teamMikaere. We’re very very very proud, and plan to walk some of the miles with him and the team.

Sponsor link coming soon!

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