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.
We blog about our day to day with Mikaere – the highs and lows. We’re as transparent as we can be.
NKH Charity Fun Run!
Saturday 28 September, Bishops Park, London
This is a fun run to raise awareness + funds for Nonketotic Hyperglycinemia. A rare and terminal metabolic disorder in children.
It’s a fun, 12km loop along the Thames Path (from Bishop’s Park east, cross at Barnes Bridge and Putney Bridge – a really lovely lovely run!).
There are no time limits, so don’t let the distance put you off. This is not a competitive run! It’s a great way to spend the morning.
To register: www.nkhcharityrun.com
We’re also looking for volunteers for the day! If you can help, please let us know.
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.
of at £1,000,000 goal
Help us raise funds for NKH Research
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!
Watch this Space!
Anyone who knows Elly knows this is her spirit of choice. Nothing like a beautiful summers day with an ice cold G&T. Together with Chris (their winemaster friend!) they’ve been exploring a few different gins and after a suggestion from the lovely Tess (their Quiz Master extraordinaire) we thought we’d try hold a gin tasting.
Are you keen? Send Elly a message to say you’d come!