Tragically, Shania died on 10th May 2020, at just 20 years old. Her mission is to raise awareness about mito as well as being a legacy for a special young lady.
Shania had a difficult birth resulting in palsy of her right arm, but she was a happy-go-lucky girl who loved life. As a teen, she starting having walking issues – falls, fatigue etc and headaches. GP visits didn’t get us anywhere, blood tests brought no significant results. I got a fibromyalgia diagnosis in 2015 and wondered if Shania had that too.
Shania lived life to the full anyway, enjoying being a navy cadet and massive Harry Potter fan. She got to Sheffield University to study Performing Arts. By her late teens, Shania began having seizures, vision problems and tachycardia but still there were no answers medically.
In Spring 2020, Shania was really poorly – flu-like symptoms and excruciating head pain. Paramedics were called and a neurological referral made. We became hopeful for some answers.
The pathologist said it was an aneursym caused by brain iron accumulation and advised that I underwent genetic testing. Losing my only child triggered severe depression alongside my traumatic grief – but I was so very proud when Shania was awarded a BA Honours Degree.
Covid slowed down medical processes and the genetic result took around a year.
It was mitochondrial disease. A variant called MELAS, from a fault in the 3243a gene passed on maternally. It made so much sense of our family’s dreadful health issues, including Shania’s. My mum who’d died at 63 and sister, at 50 after long-term chronic health issues. My brother who’d died at 21 from a brain aneurysm, like Shania.
There’s still lots we need to learn… but at least now the jigsaw pieces are starting to fall into place.
and her memory alive. It’s also to help people understand more about mitochondrial disease.
We struggled so much not knowing what was happening health-wise within our family.
Any funds raised by Shania’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 Shania’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Shania’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
