Hello, I’m Clare, from Swadlincote in Derbyshire. This is the story of how mitochondrial disease has impacted me and my family and why I want to advocate for mito.
I was brought up by my two lovely parents, Norma and John and was very close to them, especially being an only child.
Mum fell ill in her late forties starting with hearing loss and evolving into regular falls, poor mobility and seizures. Somehow she always kept upbeat and cheerful. Dad was a brilliant advocate for her and researched what may be wrong, and pressed for more tests until
This led to a referral to the specialist mito clinic at Newcastle. It was a form called MERRF, short for Myoclonic Epilepsy with Ragged Red Fibers (MERRF). Devastatingly, we lost mum to mito aged just 57 in 2012.
Shortly after, I began to experience hearing loss… and so began my own journey with the condition.
Looking back, we were a ‘tired household’ taking more naps than average, but otherwise there were no clues on what was to come.
I approach life with optimism and determination and continue to work full time for NHS as a community mental health support worker. I’ve always been a carer and cared for my precious dad after mum’s passing, until his own passing last year.
My lifeline is my beloved cocker spaniel, Lucy, who has diabetes, bless her. I also enjoy eating out, socialising with friends and being part of Deaf-initely Women, a Derbyshire-based support group.
In 2014 played a major role in mitochondrial DNA donation being passed in parliament with interviews with the BBC, Wellcome Trust and my local MP.
My mission is to do even more advocating and awareness raising – it’s something that will always be close to my heart.
Any funds raised by Clare’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 Clare’s Mito Mission leaflets – there are so many ways in which you can get involved.
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