Hello, I’m Paul from Birmingham, West Midlands. My story shows how mitochondrial disease isn't always inherited as I'm an identical twin and my mum and twin aren't impacted.
My mito journey started with me being born nine weeks premature, weighing just under 2lb, and an identical twin.
I had a tough childhood living with my mum and twin brother. She was a single mum, after my dad left before me and my brother were born, and we were living below the poverty line. My mum noticed when I was around 4 or 5 that my left eye wasn’t moving well and drifted to one side. Eventually over 5-6 years wearing glasses it seemed to be resolved somewhat.
At 15, I remember nearly dying in hospital due to lung problems that stopped me breathing properly, as well as my muscles not working properly. I spent 7-8 years in and out of hospital as a complete medical mystery.
When I got to my late teens, my eyelid drooped badly resulting in three operations spanning from 19 to 23 years old. These procedures unfortunately left me with a damaged eye lid and eye.
My mum and twin brother got tested. They both came back negative, confirming that my case was a spontaneous mutation. My twin and I became the first in the world where one twin has an inherited disease, and the other does not!
In 2007 I had major problem with my left eye- a burst abscess led to sepsis, and I was in intensive care fighting for my life. I then spent two years with my left eye sewn together, til they inserted a gold weight into my eyelid.
In 2020, I was admitted to hospital 7-8 times with kidney failure. Later that year, I went into A-Fib arrhythmia and again was admitted to hospital.
… but thankfully I survived.
Eventually, my heart rate stabilised after lots of medication and treatment. The doctors said I’m very lucky to be alive.
Many consultants and medical professionals have actually gone as far as to say that I should be dead, because nobody survives what I have.
I’ve been a bit of a guinea pig for the mito research team both here in UK at Newcastle, and in the USA for 14 years. I’ve actually had 27 muscle biopsies, and counting! It was hard back when I was first diagnosed because I knew nobody going through the same thing as me, and there were no charities specifically for those with mito.
I still have to go to lots of appointments, and I have about 17 different consultants, for my heart, eyes, hearing, kidney, stomach, neurology – you name it, the list is endless!
I spent my childhood and teens scraping together any kind of pencils and paper so that I could draw. I excelled in art & design at school with the support of two great teachers, and achieved exceptional results. This led to me spending my days going to work early in the morning to fund my fees, and then going in to college.
I have had a great career as a graphic artist, creating lots of products that you can still see now in the shops, and that’s been my passion always.
I also adore everything Star Wars, and have a huge collection of merchandise!
and raise awareness of mitochondrial disease, supporting charities as I go. I think that art is universal.
When I was diagnosed, I felt completely isolated.
I’m still tired of having to explain my condition – even having to spell ‘mitochondria’ over and over again – but the mito world has grown massively since I was diagnosed.
Any funds raised by Paul’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 Paul’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Paul’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!
Fundraise and shop!
Other ways you can support us
Visit our Support Us page for more inspiration!
© 2026 My Mito Mission. Design by Carl Holderness. Built by lnrgraphics
contact@mymitomission.uk | 0300 102 1112
My Mito Mission is a Charity Registered in England & Wales No. 1212268 at c/o Project Colt, Bridgefield Mills, Elland HX5 0SQ
