Hello. I’m Bethany, 15. This is me with my family - my little sister Bonnie, my big sisters Karen and Adele, and my mum and dad - in our happy place, Disneyworld.
Bethany’s mum, Caroline tells the family’s journey with mito – with a little help from Bethany:
Bethany was born in March 2010 and at 6 weeks wasn’t gaining weight so was given a nasogastric – or NG – tube. At 15 months, although bright as a button, Bethany wasn’t reaching the expected physical milestones and was very ‘floppy’.
It was an incredibly difficult time and ultimately led to 5 long, stressful months in Addenbrookes. Eventually, Bethany’s respiratory and food absorption issues were stabilised with a respirator and 2 new feeding tubes. Her dad, Steve and I had training so we could bring her home.
Thankfully, Bethany has mostly thrived since, just needing check-ups and the odd hospital admission for chest infections. She’s remained a sassy and feisty little character who definitely lives up to her initials ‘BOS’!
Through getting involved with the Lily Foundation charity, we self-referred to the specialist Mitochondrial Disease Clinic in Newcastle where a diagnosis was confirmed.
Through Lily, we also met other affected families. The Brooks, who now run ‘Steph & Jake’s Mito Mission’ became great friends. Bethany and Jake have made a particularly strong bond – and consider themselves married!
Despite her physical challenges, Bethany lives life to the full. She can tell if she’s heading for a ‘mito crash’ and rest to minimise it. She started mainstream high school in 2021. ‘My favourite subjects are Drama and PE’ says Bethany. ‘I love power chair football, my Switch, Norwich City and Disney. We’re all Disney crazy, including my sister Bonnie. Our dogs are even called Baymax & Olaf!’
My family and friends will be able to use my leaflets to let people know more about mitochondrial disease.
My school are already incredibly supportive and I am sure they will rally around my mission too!!
Some local facilities don’t accommodate wheelchairs and think that is really unfair and I try to change it.
It will be awesome to keep making a difference and to improve people’s knowledge about mito too.
Whether you support Bethany’s mission, any other single mission or My Mito Mission as a whole – it’s all the same great cause.
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 Bethany’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Bethany’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!
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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
