Devastatingly, Kane passed peacefully on 18/05/2025, aged just 2 years old. His mission carries on as a tribute and a legacy for a fiercely loved little boy.
Receiving difficult news about your baby's health is heartbreaking. Kane's story below tells of how his family came to discover his devastating diagnosis.
Kane was born in August ’22, a precious new addition to our family, who live in North Greenwich, London. Twitching in Kane’s wrists, then in his legs and feet were the first signs of something being different to what I’d experienced with his big brother Harley, now 8.
After trips to the GP and A&E we were reassured Kane wasn’t having seizures and was told he had severe reflux. After finally being referred to a paediatrician we still couldn’t wait and took Kane to A&E, an EEG confirmed Kane was in fact having seizures. His seizures became so uncontrolled we had to be transferred to a children’s hospital where Kane was being given rescue medications multiple times a day consistently for a few weeks. Kane lost the ability to smile and use his arms purposefully. We were in hospital for 11 weeks over the Christmas and New Year period.
The diagnosis came the day before Christmas Eve. It was a variant of mitochondrial disease caused by a gene that doctors said hadn’t any other recorded cases.
We came home and adjusted to life. Kane was seizure-free for about a month, then back in hospital twice more. Currently he’s having around 7 seizures a day but not needing rescue medications. His dad Craig has given up work and I work from home, to give Kane the 24/7 care he needs. We thankfully have a valued support team around us including Craig’s mum ‘Nanny Kathy’; sister, Siobhan and dear friend, Jade as well as lots of other close family and friends.
Kane is stable currently and enjoying being home having lots of cuddles and walks down the river Thames, getting fresh air. He loves sensory lights and music. His name means ‘warrior’ and he’s certainly our beautiful little warrior who is loved fiercely.
Devastatingly, Kane passed peacefully on 18/05/2025, aged just 2 years old.
His mission carries on as a tribute and a legacy for a fiercely loved little boy.
about mitochondrial disease and raise funds for more much-needed research which could help Kane and so many others.
We hope that by working together with others we can help avoid other parents having to go through what we are going through with our precious Kane.
Any funds raised by Kane’s mission goes to My Mito Mission’s
central funds to be granted towards research and support projects
to benefit everyone affected by mito.
Spreading the word, following, sharing, as well as donating and raising funds are all really helpful and valued. From running a race to holding a bake sale, hosting a collecting can to giving out Kane’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Kane’s mission, choose a way that suits you below.
Regular donations are the most powerful way to support our vital work, allowing us as a small, high-energy charity to plan and build from a strong foundation.
We need a 1000 strong team of amazing people to donate any amount from just £2 a month. 1000 is a lot, but – one by one – we know that we can reach it. Find out more here.
For any other amount or frequency (eg weekly, quarterly, annual), simply contact us
We’d love your support with our fundraising… and we can provide supporting materials. Just ask!
Fundraise and shop!
Other ways you can support us
Visit our Support Us page for more inspiration!
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contact@mymitomission.uk | 0300 102 1112
My Mito Mission is a Charity Registered in England & Wales No. 1176616 at c/o KT Hydraulics, Gannex Park, Dewsbury Road, Elland HX5 9AF
