Baz's

Mito Mission

Based in Beccles, Suffolk

Hi, I’m Baz. After decades of unexplained health problems, a rare diagnosis of Leigh Syndrome finally gave me the answers I'd been searching for.

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Baz's

Story.

July 2026

Hi, I’m Baz from Beccles in Suffolk and I was born in 1962.

I haven’t worked since April 2005 due to irritable bowel syndrome. However, my mito story begins in January 2022 when I fell from standing and broke my hip. My wife drove me to the hospital, and it was initially thought to be a severe sprain. The x-ray surprised everyone; broken hip and a total hip replacement was the order of the day.

The orthopaedic consultant felt the cause needed investigating, so he instructed my GP to arrange a neurology appointment. He also thought my bones showed signs of weakness.

The neurology consultant noticed I have deformed feet, and, after listening to my medical history, thought I may have ataxia. I had also been diagnosed with M.E. and peripheral neuropathy over the years. He decided that a blood sample should be taken for genetic testing.

19 months later the results came back

– I have Leigh Syndrome.

Not knowing anything about this or mitochondria, I was relieved to hear that this is an ‘umbrella’ term for all the health issues/diagnoses that I have been given. So, the symptoms could have started to develop over 20 years ago! The official diagnosis is a mutation in my mitochondrial DNA (m.9176 T>C).

Unfortunately, my mother is dead, and I also don’t have any siblings, so hereditary testing is out of the question. As this is passed by the maternal genes, I have no way of knowing its foundation, however I do not have any children to worry about passing it on to. My neuropathy is a constant presence, and I have developed adult-onset asthma. My throat, and swallowing, are soon to be investigated by hospital ENT.

My mobility seems to be getting worse each day, and since I left hospital, my wife has become my full-time carer (and excellent she is too!). Also, I have another carer… our pet dog (TJ, our greyhound) has become my Emotional Support Dog. He helps me with my mental health, which is another symptom. Ever since I was brought home from hospital, he took on the role, and we have nurtured his wonderful personality/temperament. He goes everywhere with us, and if he can’t go somewhere then nor do we. Among his visits are 4 hospitals and 2 medical practices – the doctors and nurses love him.

To help me with my walking I have been supplied with 2 pairs of orthotic shoes, and several pairs of orthotic insoles.

I am under cardiology and respiratory at my hospital, and

I am the only patient they have with Leigh Syndrome.

So, I’m pretty rare, but I have a great neurology consultant, and a wonderful neurology Professor at Addenbrookes in Cambridge, both of whom I can contact at any time for help. I have given a blood sample to aid further research into Leigh Syndrome. Conversely, the GPs at my local medical practice are not too familiar with Leigh Syndrome and so take their lead from the specialists.

The biggest obstacle that I have found is to be taken seriously with all aspects of my symptoms… and by all the people that are involved in dealing with us. But this also means we must respond seriously to what life has given us: for instance, I experience numbness in my hands on a frequent basis, and especially when I’m driving. Both my neurology professor and consultant have cleared me to drive, but I have taken the decision myself to stop driving except in extreme emergencies. I am responding to what my body is telling me.

I have a lot of time on my hands which I fill making models (Airfix, wooden Book Nooks/puzzle kits, adult Lego style kits) and making greeting cards. I also read, and I try to get Emotional Support Dogs recognised as assistance dogs in law. I enjoy air museums, music, and spending time with my dog.

My hope is that my mission

should help raise awareness of

mitochondrial disease and to show that it happens in older people too.

I hope that anyone getting a mito diagnosis is not scared, as it can make sense of other symptoms, plus there is a lot of help (and it’s increasing) out there.

Any support for Baz's

mission will be appreciated.

Get involved and

support Baz's cause.

Any funds raised by Baz’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 Baz’s Mito Mission leaflets – there are so many ways in which you can get involved.

If you’d simply like to donate to Baz’s mission, choose a way that suits you below.

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