Hello, I’m George from Knaresborough, North Yorkshire. My story shows how adult onset mitochondrial disease can impact upon family life, in our case, when it's a parent whose affected.
I was probably around 12 when I first realised something wasn’t right with mum’s health. Her eyesight had been deteriorating, she couldn’t get her driving licence renewed and her gradual sight loss was now very much affecting our daily lives. She’d also been diagnosed with diabetes a couple of years previously.
Into my early teenage years, mum was becoming more and more poorly with no real answers as to what was going on.
She assured us that we hadn’t inherited it, but we have no written details of the diagnosis, so we don’t know for sure and neither do we know if a specific gene or type of mito was identified. My parents didn’t tell me that it was life-limiting back then in the sense we might lose her soon, but they did tell us that there’d likely be continued deterioration. I’m not sure whether they had any indication of mum’s prognosis or not, or if they were understandably shielding us.
Had any signs been there earlier that mum might have had something like mitochondrial disease? Yes, with hindsight – although I didn’t particularly see it as a child. She had an active early adulthood and in fact was an army officer at Sandhurst but there was a story of how she’d walked into a tree on night manoeuvres, which although funny in a way, may well have been related to her illness, as ‘clumsiness’ can in some cases be an early indicator of mito. My relatives and family friends tell me that looking back, mum was often too tired to attend social events and also generally ‘under the weather’ a lot. When she became pregnant with my older brother William, she struggled with the physical demands of pregnancy and he was born three months prematurely. When she was carrying me, she struggled again so had plenty bed rest but still I was born at 6-month gestation and was very poorly for a while. It caused mild cerebral palsy and significant developmental delays for me. For instance, I was 3 or 4 before I could walk or talk.
Like many people with the mitochondrial disease, mum would have periods where things seemed fairly stable, but then would become worse with new symptoms appearing such as increasingly debilitating fatigue, walking, balance and memory issues. Whereas I had grown up with a disability, mum found it hard to adjust- but at least it was something we could talk about and work through together.
Alongside the cerebral palsy and mum’s health challenges, I’d been diagnosed with autism and these combined to delay my progression to further education. However, in 2018 I was really looking forward to starting university to study history. The summer saw us on holiday as a family in the same place we’d been the year previously and it was very evident how much mum’s health had deteriorated in just 12 months. It was scary and I remember dad reassuring us, ‘As long as I’m here, you won’t have to care for mum’. Dad had always been prone to headaches and they’d become particularly severe earlier that year, but tests hadn’t found anything. That September he had a major stroke, and within days, he died. It was an unbelievable shock. He was only 56.
I knew my dad would have still wanted me to go to uni, but it was an incredibly difficult time. Mum did her very best to reassure us saying, ‘we’ll get through it’, but she was naturally devastated and very negatively impacted by dad’s passing both mentally and physically.
I remember feeling very much like I’d been orphaned, because I’d lost my dad and mitochondrial disease was already robbing me of my mum too.
She was admitted to a local care home on 20th March, aged just 59. We visited on Mother’s Day 22nd and arranged to come again the following day, Will’s birthday … when suddenly the world locked down due to the pandemic and we couldn’t go and see her.
It was around a year before single visitors were allowed and I was finally able to go back to the care home. It was shocking how much mum had deteriorated. She couldn’t talk, was very limited physically and it was difficult to engage with her – especially around the restrictions where we weren’t supposed to touch or hug. I did my best to juggle my studies with seeing mum. Thankfully, my university were incredibly supportive, and that really helped me through. In Sept 2021 when visiting was fully back, Will took over being mum’s main visitor so that I could throw myself into my final year and degree work. Also around that time, we were told by the care home that there was a dementia diagnosis on mum’s records which we’d known nothing about. It explained a lot and we wish we’d known much earlier.
In November, we were given a prognosis of up to six months. I did my best to have my dissertation prepared as early as possible. I went home for the Easter holidays mid-March and it was clear that mum’s death may not be far away now. I was reluctant to return to uni but did so – with a ‘pick up and go bag’ permanently packed. The call came in late April, almost exactly six months after the prognosis was given and I had just a few hours with mum before she died aged just 61.
In many ways, it feels like the time immediately following dad’s passing was the last time I saw mum, or at least mum something like her normal self, so it’s almost like they died at the same time even though a few years apart.
My own disability is suspected to be a result of mito in the respect that mum couldn’t carry me to term because of its impact on her body. My being born so prematurely led to all the fragility that brings, including a stroke at just 5 days old and its effects, including the cerebral palsy. So far as my childhood and adult memories go, those of my dad are overall very happy ones, but my memories of mum are inevitably intertwined with her illness and feelings of needing to look after her, rather than her being able to care for me – with all the complex feelings that brings. Whilst other students at uni were ‘eye rolling’ about their parents being overly-attentive and protective, mine were unfortunately unable to be there for me.
I know that everyone’s circumstances are different, but I hope that my story has given some insight into what it can be like having a parent with mito. It’s been very tough, yes – but having to cope with everything has made me resilient and I’m glad that it’s enabled me to be understanding and supportive for other people in my life who may be going through life challenges.
If telling our story helps just one person feel less alone then it will make our mission worthwhile.
To help this happen, even in a small way feels like a lovely legacy for our mum, and our dad too.
Any funds raised by George’s 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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