Based in Norwich, Norfolk
Hello. I’m Bethany, 12. 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’.
Breathlessness one day quickly led to hospital
and a lung collapse.
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.
Bethany has ‘mitochondrial myopathy’
and an extremely rare variant of mito involving the TAMM41 gene
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!’
Thanks for reading our story.
`Bethany and family
My mission is to raise
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!!
I’ve already spoken up about accessibility issues
and made changes happen
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.
Bethany's Mito Mission
Get involved and
support Bethany’s cause.
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.
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