Thanks for taking the time to visit my JustGiving page.
This is the story of Mikaere, a beautiful little boy, who will celebrate his second birthday during October. Mikaere has Nonketotic Hyperglycinemia - NKH.
NKH is a rare, terminal metabolic disorder.
Essentially Mikaere can't process glycine, a neurotransmitter. This causes seizures and severe development and learning delays. Treatment options are limited.
Every day is precious.
Mikaere inherited NKH from his Mum and Dad, Elly and Sam - they had no idea they are carriers.
As well as being fantastic parents, they are doing everything they can to fund a gene therapy cure for NKH. They have partnered with Joseph's Goal to raise funds for NKH Research done by Dr Nick Greene as part of UCL. He's currently the world leader in NKH research.
Elly and Sam are determined to give the research team the best shot at finding a cure for NKH.
I work with Makaere's Grandad, Andy, and he is championing the cause. The company we work for, Infinis, has Joseph's Goal as our Charity of the Year. Joseph's Goal is a small charity, every penny raised matters and we thank each of you in advance for your support. We'd like Mikaere to celebrate many birthdays - I was going to do this in January, but it can't wait!
Please leave your messages for Mikaere, his family and for all those who live in hope for a cure for NKH. This is all about them, their dedication and their bravery.
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