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He’s a man with a mission … to increase awareness of a rare genetic condition and boost research into it.
Eddie Wall from Shepley was shocked to discover he had mitochondrial disease in 2013 when he was 26.
Now 37, he is one of several individuals and families across the country who have set up their own fundraising missions but all with the same aim which is to raise awareness, funds for research and, above all, hope for a cure.
According to the NHS, mitochondrial disease is a very complex condition.
In nearly every cell in the body mitochondria are responsible for producing energy but if they don’t work properly it means tissues and organs such as the heart won’t function correctly. Sometimes the mitochondria are not very efficient and, in severe cases, they don’t work at all.
The parts of the body commonly affected are those with the highest energy demands such as the brain, muscle, liver, heart and kidney. There is no cure but treatments can help to relieve the symptoms.
Eddie discovered he had the disease quite by chance.
It happened after his older brother, John, had collapsed suddenly in Leeds city centre but it wasn’t until three years later that doctors were finally able to pinpoint the cause of his collapse – mitochondrial disease which is known as mito for short.
Eddie went with John to a specialist appointment in Newcastle – the nearest specialist mito centre to Huddersfield – and as they talked about their medical history it was revealed both brothers had been born with cataracts which then raised the suspicion Eddie may have mito too as visual impairment is one of the symptoms.
It turns out their parents are both carriers of the faulty gene and doctors then discovered that Eddie had a dangerously enlarged heart and needed urgent treatment.
Eddie said: “He basically told me I shouldn’t have still been alive with a heart in that condition.”
Eddie, who had just met future wife Natalie, said: “It was a pretty scary time. I was offered an experimental drug and, thankfully, it worked and is now used for many other patients after my successful trial on it. It didn’t treat the mito itself but it did have an impact on my heart which has been fine and stable since.
“I’ve had little or no progression of any other symptoms but John’s health hasn’t gone quite so well so we are an example of how the same genetic issue can affect even siblings differently which can be one of the complex things about the condition.”
Eddie says that, with hindsight, mito had had a major impact on his health since school.
“During school PE lessons I’d exercise but then often be sick,” he said. “When I got home I’d often fall asleep for a few hours. Now we know that my body doesn’t produce enough energy which 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 three I underwent 13 risky operations up to the age of seven. This fortunately restored good sight to one eye but I’m practically blind in the other and nothing underlaying it was ever investigated.”
Eddie has been tailor for more than 15 years, starting his own business, Off The Wall Tailoring, in 2021 specialising in high quality bespoke garments such as suits, jackets, trousers and waistcoats for men and women. He travels to clients all over the country but only uses Yorkshire cloth, usually from Dugdale Bros in Huddersfield town centre or Bower Roebuck in New Mill.
He and Natalie, an accountant, have been married for nine years and have two daughters, seven-year-old Isabella and Emily, who is four.
Eddie added: “I know I’m really lucky compared to lots of people who have mito and this is a way I can help everyone who is affected.
“The funds that my mission raises go to a central fund which supports projects from which everyone benefits.”
To support Eddie’s Mission go to https://www.mymitomission.uk/eddies-mito-mission-huddersfield/
There are three big fundraising events coming up – all in Yorkshire including one in Huddersfield.
A fundraising ball will be held at the Cedar Court Hotel in Bradford on Saturday, April 6, from 7pm.
A Yorkshire 3 Peaks Challenge will be held on Friday, May 17, and it costs just £35 to take part.
A corporate golf day will be held at Fixby Golf Club on Monday, July 8.
To find out more go to https://www.mymitomission.uk/our-events/ and click on each event for full details.
Written by ANDY HIRST who runs his own Yorkshire freelance journalism agency AH! PR (https://ah-pr.com/) specialising in press releases, blogging, website content and copywriting.
