The Sanders' story shows how mitochondrial disease can affect multiple members of the same family but in different ways and also the implications of a maternally inherited variant across generations.
As told by daughter and niece Amber…
My dad was one of five kids, all male but one. Their mum, my grandma, sadly died at just 52 years old. She wasn’t well, but the cause of her illness was unknown at the time. I remember hearing that her mum had had a lot of miscarriages, but again with an unknown cause.
Around 2006-7 my Uncle Kevin was taken to hospital with suspected encephalitis. He’d been on holiday to Bulgaria recently, so doctors thought it could have been a mosquito bite that caused it.
He was treated for the heart issues by having an internal defibrillator and stents put in, and then was referred to a mito specialist in Newcastle and sadly diagnosed with MELAS, variant of mitochondrial disease.
There wasn’t much advice available at the time, and no treatments for the mitochondrial disease – as is the case now. He experienced neurological dementia-like symptoms, sometimes ‘blanking out’, sometimes coming round quite quickly.
My Uncle Ronnie has mito too; he was the second-born, and is now 63. Uncle Wally, now 58, is probably the healthiest of the siblings, he doesn’t currently have symptoms but takes the necessary medications.
My dad always struggled with nutrition and putting on weight, as the rest of his family did. He didn’t feel hungry, so he didn’t cook for himself which meant I had to step in and help out to ensure he was eating. Eventually, he was put on nutrition drinks to help with this.
He worked as a driving instructor, and really struggled to accept that he wasn’t well. It was especially hard when he couldn’t pass his driving instructor test any more. He would sometimes just stare at the blank TV; it was so difficult to watch as these neurological episodes and his weight loss got worse.
He couldn’t even make it up stairs anymore, or walk a few steps. His weight was down to just 35kg, and as he was a lifelong smoker he struggled with breathing issues and COPD. His oxygen levels were at just 40% at points.
My dad passed away that year – I was 25 years old. It was thought to be as a result of his COPD, and the cause of death was cardiovascular failure. In 2020, Uncle Kevin also died aged just 55 in a very similar way to my dad.
We asked for no flowers at my dad’s funeral, and instead picked a charity to support. I wanted to find a mitochondrial disease charity, but nothing came up. We even contacted the hospital to see if they knew of anything, but with no luck, we ended up choosing the Poppy Appeal. On the first anniversary of his death, I looked again out of curiosity and still couldn’t find a thing – I thought it was crazy that there was nothing out there!
It wasn’t until last week (November 2025) that I looked again, and found My Mito Mission. I really resonated with some of the other missions’ stories.
Our family’s variant of mitochondrial disease only passes down through the maternal line. This means that Noreen, the only sister, has unfortunately passed MELAS down to her daughter Sarah, who was diagnosed many years ago and has stroke-like episodes, migraines, joint pain and stiffness in her hands. Sarah has three daughters of her own (aged 16, 10 and 3) – at the moment none of the kids are experiencing symptoms, but it’s scary to think about how it might affect them in future. Noreen has diabetes and cognitive issues, as well as hearing issues, muscle weakness, and an underactive thyroid.
We are all lifelong Spurs fans, thanks to my great Uncle John. Many of the family are season ticket holders. Everyone in our family loves to travel. Before Kevin got sick, my Dad and Kevin would often go away together with their friend Mick and my brother Scott.
and raise more awareness of this awful disease that so many people, including medical professionals, haven’t even heard of.
I still haven’t met another family impacted, but am looking forward to any opportunities to connect with other families through My Mito Mission.
Any funds raised by The Sanders’ mission goes to My Mito Mission’s
central funds to be granted towards research and support projects
to benefit everyone affected by mito.
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