Hello, I’m Emily from Sunderland, Tyne and Wear. My story shows how mito can hit hard out of the blue at any age but also how you can fight back against its impact.
Emily was born fit and healthy and we led a normal life in our Sunderland home until 2015, when she was around 15½. Emily woke up generally unwell one day and the next began having major seizures. They couldn’t be controlled in A&E and she was transferred into critical care. Drug misuse was quickly ruled out.
Emily came home after 2 weeks but just a week later, the seizures returned. Despite excellent care, more specialist neurological knowledge was needed and we were referred to Newcastle. We feel lucky that there’s a specialism in mitochondrial disease so near to us. Newcastle’s Professor McFarland suspected mito at the outset, and we had a diagnosis within 6 weeks.
Emily was gravely ill with the seizures continuous and uncontrolled. She was put into an induced coma for 3 weeks. When they brought her out, the seizures recurred. Transcranial Magnetic Stimulation alongside medication eventually brought them under control. But Emily had to relearn how to walk, talk, eat … everything, and was in hospital for 6 months. Despite all this, Emily went on to complete her GCSEs, excelling in her favourite science subjects.
There have been a number of hospital admissions and ITU interventions over the past few years, each time requiring Emily to re-learn basic functions like eating, walking a few steps etc however she always remains positive and has steely determination to regain her function and independence and treats every set back as temporary. The seizures over the past couple of years have been well controlled as she has moved onto newer medication.
Emily’s vision is impaired and mobility restricted but we focus on the many things she’s able to do. We love to travel in our camper van and Emily enjoys watching Netflix, quizzing, crosswords, online shopping and having her hair and nails done. She’s also co-director of Studio Inclusive – a local gym run by her PA and friend Asha.
In February 2024, we were thrilled to be part of a team who went to Westminster to raise the profile of mito amongst MPs.
The more people who know about mito, the less isolated people impacted will feel and the more chance of treatments and a cure.
Any funds raised by Emily’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 Emily’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Emily’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
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