Bethany's

Mito Mission

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.

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Bethany's

Story.

Bethany as a Baby

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.

Bethany with Grandparents
Bethany with her grandparents, Trevor and Shirley

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

January 2022

Bethany and Bonnie

My mission is to raise

more awareness.

Bethany with group

 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 at halloween

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.

Be a Regular Mito Hero

To make a regular donation by direct debit through GoCardless, please click on the relevant image below

For any other amount or frequency (eg weekly, quarterly, annual), simply contact us

Fundraise for Bethany’s Mito Mission

We’d love your support with our fundraising… and we can provide supporting materials. Just ask!

JustGiving Logo
Set up a fundraising page above (Use the orange ‘Fundraise For Us’ button)
Set up a fundraising event on Facebook using the image above
Sponsor Form
Download a sponsor form to print off by clicking the image above
Collecting Can
Ask us for support materials such as buckets, cans, leaflets and more

Fundraise and shop!

Amazon Smile
Support us at no cost to you when you shop with Amazon
Fundraise on Give as You Live
Support us at 100s of stores. Click green, ‘Find Your charity’ button
My Mito Mission Shop
Check out our merchandise to raise awareness and funds
Fundraise on eBay
Click, ‘add to my favourites’ (just under our charity details)
PayPal Giving Fund Logo
Set us as your favourite charity (under our name to the right)

Other ways you can support us

My Mito Monthly Prize Draw
Support our Monthly Prize Draw on Crowdfunder
Nominate My Mito Mission
Nominate Bethany's Mission at your work or club
Collect things to sell
Collect stuff we can sell, raffle prizes, tombola prizes
Help to sell our merchandise
Help us to sell our merchandise. Contact us
Volunteers needed
Donate your time. Let's chat about what you might do

Visit our Support Us page for more inspiration!

Every like, comment and share counts.
Check out My Mito Mission’s Facebook Page, Twitter & Instagram too!
Bethany's Mito Mission Logo

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