Based in Leeds, West Yorkshire
I’m Edward, known as ‘Eddie’. I was born and raised in Batley, West Yorkshire but now live with my own family in the Kirkstall area of Leeds. My story helps show how varied mito can be, and how it can strike families out of the blue ...
My mito diagnosis came pretty much out of nowhere in 2013, when I was 26.
My older brother John had collapsed suddenly in Leeds city centre. Long story short, it took three more years before mitochondrial disease was suspected, and he was then referred to the nearest specialist clinic in Newcastle.
I accompanied him to the appointment and during the medical history chat, it came out that we’d both been born with cataracts. This raised suspicion that I might also be affected, as mito often involves vision impairment.
I was tested too, and we were both diagnosed
with a very rare variant of mitochondrial disease
It hasn’t got a name as such, but involves the GFER gene. We’re first in our family to have it, to our knowledge. Our parents are both carriers of the faulty gene.
My heart was found to be dangerously enlarged … and I was given a 5 to 10 year prognosis without treatment. I’d been totally oblivious to having any heart issues, or mito. I’d just met Natalie, who’s my wife now, and it was a pretty scary time.
I was offered an experimental drug and thankfully, it worked. It didn’t treat the mito itself, but its impact on my heart – which has been fine and stable since. I’ve had little or no progression of any other symptoms either. John’s health hasn’t gone quite so well since, so we’re an example of how the same genetic issue can affect even siblings differently, which can be one of the complex things about the condition.
One clue I had mito, with hindsight, was the
exercise intolerance I’d had throughout my life.
During school PE lessons for instance, I’d exercise, but then often be sick. Now we know that my body doesn’t produce enough energy, it explains why I can struggle with over-exertion. The eyesight difficulties were also an indication that I might have the condition. Practically blind by the age of 3, I underwent 13 risky operations up to the age of 7. This fortunately restored good sight to one eye, but I’m practically blind in the other. Nothing underlaying was ever investigated.
I’ve successfully worked as a tailor throughout my adult life and started my own business in 2021, ‘Off the Wall Tailoring’ specialising in high quality, bespoke garments. Natalie and I married two years after meeting online and have gone on to have two gorgeous little girls, Isabella and Emily. Along with Natalie’s career in accountancy, this all keeps us pretty busy!
Thanks for reading my story.
My mission is to help highlight
mitochondrial disease as a whole.
I know that I’m really lucky compared to lots of people who have mito and this is a way that I can help everyone who’s affected.
The funds that my mission raises go to a central fund which supports projects from which everyone benefits.
It’s great to think of a future where mito
is treatable, and better still, curable.
Any support – no matter how small or substantial – that anyone can give to help us raise awareness and funds for research through my mission will be massively appreciated.
Please check out all the ways you can help below. Thank you.
Eddie's Mito Mission
Get involved and
support Eddie’s cause.
Whether you support Eddie’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, giving out Eddie’s Mito Mission leaflets to finding a home for a collecting can – there are so many ways in which you can get involved.
If you’d simply like to donate to Eddie’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
Fundraise for Eddie’s Mito Mission
Fundraise and shop!
Other ways you can support us