Incredibly sadly, Milanna passed away aged just 2 years old on 6th February 2025. Her mission goes on as a tribute and legacy for an amazing, strong little girl.
Beautiful Milanna's story illustrates the heartache that is caused by a diagnosis of a mitochondrial disorder. Please read Milanna's story to help her family spread the word about the importance of mitochondrial research.
Following multiple miscarriages, Milanna couldn’t have been a more wanted or cherished daughter when she arrived in the world on May 14th 2022… my partner Malaky’s and I’s precious first child.
Milanna was a normal, healthy, happy baby. Just after her first Christmas she was poorly but Calpol and reassurances from others temporarily took away my niggling instinct that something wasn’t right. Then in February, she began having horrendous seizures – up to two and a half hours long and literally hundreds of them.
The diagnosis was epilepsy. Milanna was prescribed medication to control the seizures, but her subsequent regression and new symptoms such as tremors once again rang alarm bells and we pressed for more help.
A referral to a genetics consultant brought results which were our worst nightmare. A mitochondrial disorder caused by a mutation of the NARS2 gene – sight and hearing loss to come, and severely life-limiting.
We couldn’t begin to accept this outcome for Milanna. By April, we were at the specialist mitochondrial disease clinic in Newcastle, desperately hoping for different news. We were told there were only 2 other known cases of the NARS2 variant in the UK and those children are aged around 8 and 10. This gives us a little more hope … but still means Milanna’s prognosis is unknown. There’s a possibility of taking part in drugs trials which may help Milanna. Our biggest hope depends on such trials and more research.
…about the condition and the vital importance of research – not just for us, but everyone with mito. Plus for the millions of people with linked illnesses.
Whether it’s awareness raising, fundraising or a simple donation we’d be very grateful for any help in Milanna-May’s name.
Any funds raised by Milanna’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 hosting a bake sale, homing a collecting can to giving out Milanna’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Milanna’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.
Support Milanna by Joining Project 1000 Strong!
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!
© 2026 My Mito Mission. Design by Carl Holderness. Built by lnrgraphics
contact@mymitomission.uk | 0300 102 1112
My Mito Mission is a Charity Registered in England & Wales No. 1212268 at c/o Project Colt, Bridgefield Mills, Elland HX5 0SQ
