Give the gift of more time
For families living with NKH, all they want for Christmas are more moments together. You can help.
Give the gift of more time
For families living with NKH, all they want for Christmas are more moments together. You can help.
One in three children born with Nonketotic Hyperglycinemia (NKH) won’t see their first birthday. For many families, this Christmas may be their last together.
NKH is a rare and terminal metabolic disorder that limits the lives of the children it affects – but there is hope.
At The Mikaere Foundation, we’re working with our research partners at UCL and the University of Colorado to find an effective treatment that could give children not just one Christmas… but a lifetime of them.
Your support can make that possible.
Every donation helps fund the research and care that could help NKH families share more hugs, more laughter, more time together.
“I don’t take a second with my son for granted because I know every day is precious. I want a lifetime with my boy – more cuddles and smiles, more walks and holidays. All I want for Christmas is more time with my Teo.”
– Laura, NKH Mama to Teo
Every gift helps
Help us learn more
about NKH
£50
could fund special restriction enzymes, used in NKH Research. These work like molecular scissors to cut up the long strands of DNA in our cells. This is vital in helping us learn more about the genetic mutations of NKH.
Support families when they need it most
£100
could fund a month’s worth of outreach and disorder information, providing NKH information to newly diagnosed families right when they need it most.
Help scientists get closer to a cure
£1250
could fund a week of a post doc researcher, analysing sample assays, which tell us if NKH gene therapy is working in our models, getting us closer to a cure. We’re on the cusp of a clinical trial, and you could help tip us over.
* When you make your donation, the money goes to where the need is greatest. This is typically towards NKH Research into Gene Therapy or similar, with our research partners at UCL.
“All I want for Christmas is a cure for Cara-Grace, so that we can have many more cuddles and photoshoots.”
– Vicky, Cara-Grace’s Mama
“All I want for Christmas….”
“What I’d like for Christmas is breakthroughs in treatments for NKH.”
– Dr Nick Greene, UCL, NKH Researcher
“All I want is Jack at home for Christmas”
– Helen, Jack’s Mama
“All I want for Christmas is gene therapy for NKH.”
– Laura, Teo’s Mama
“What I wish for Christmas is that we make real progress towards a treatment for children with NKH, so we can bring them hope”
– Dr Van Hove, University of Colorado, NKH Researcher
Sam and Elly – Co-founder of the Mikaere Foundation
“All I want for Christmas is a cure for NKH” – Kris, Mason’s Dad
“All I want for Christmas is to see Alice continue to grow and remain pain free, and for all her NKH friends to do the same.”
“In Alice’s first ten years she experienced near constant pain, hospital stays, OCD, self harm, inability to sleep, aggression, violent outbursts and sky-high anxiety and fear. She is finally experiencing a period of reprieve, and while we still deal with many NKH related problems, Alice has found a steady spot where she can be happy. It feels hard won. Now I worry about Alice outliving me – it terrifies me as her full time carer. ‘Mild’ NKH is horrific. If I had a magic wand, I’d eliminate NKH entirely.”
– Charlotte, Alice’s Mama
“When in hospital, one of our nurses said ‘at least you know NKH is life limiting, and you can make your memories together’ and we literally live by this moto. We have been able to take Sofia to Disneyland Paris, Turkey and Tenerife – and feel lucky that Sofia is well enough to go on lots on adventures like these. All I want for Christmas is that Sofia continues to be able to have her adventures and for us as a family to continue making amazing family memories. “
– Ashley, Sofia’s Mama
“All I want for Christmas is a cure for NKH. I wish for many more Christmases with my beautiful boy, and for the day when no child suffers from NKH and no parent has to carry the constant worry, pain and helplessness we have known.”
– Evita, Alex’s Mama
