Charlotte's variant of mitochondrial disease is one of the many which, as yet, are unidentified. Please read her story to find out more...
I was prone to back pain, chest and kidney infections throughout my childhood and walked with an abnormal gait. Swallowing, respiratory and vision issues developed in my teens. By my twenties, I was struggling to walk so was referred to a neurology specialist, and finally started to get some answers.
As yet, the variant is unidentified. I’m on the 100,000 Genome Project database and taking part in a research study funded by The Lily Foundation in the hope the variant can be found.
Between my health and losing my dad to a brain tumour when I was just 13, I missed quite a lot of school. My ill health subsequently impacted on my ability to attend college and hold down part time work, so in 2014 I set up a beauty and therapy business with my sister, Steph, allowing better flexibility. By 2018 this too became challenging.
Increasing swallowing issues meant my body wasn’t getting enough nutrition and this eventually led to having a peg fitted in late 2022. I got Covid in hospital and was bed bound for months with a really weakened left side. Getting well enough to come home was slow and hard.
That same year I began volunteering at the Neuromuscular Centre, Winsford doing admin duties. It’s a fantastic charity and social enterprise which supports people with neuromuscular conditions. I’m now also employed there part time giving benefits and services advice to service users. I rely on a wheelchair mostly to get around, but can walk with crutches when my fatigue levels allow.
I live in Crewe with husband, James who I met at 18 and married in 2016. My hobbies include walking our beagle, Rosie, audio books, films and tv.
…even amongst the medical community. Often doctors don’t often know about it and I have to explain.
…not solely those with mito. It could be the key to treating many illnesses which also involve mitochondrial dysfunction.
Any funds raised by Charlotte’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 Charlotte’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Charlotte’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.
We’d love your support with our fundraising… and we can provide supporting materials. Just ask!
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