Our family's story shows how a mitochondrial disease diagnosis can impact across different generations, and raise questions about what the future might hold.
Hi, we’re the Merryweathers. I’m Claire, and I live with my partner Greg and our children George, Matilda and Daisy.
I started experiencing issues with my eyesight at around 7 years old, then was diagnosed with deafness and diabetes in secondary school. Over time, these issues have slowly deteriorated, and it was my diabetes consultant who suggested there could be an underlying cause, and recommended I get tested for mitochondrial disease.
…which made sense of some of the health issues I knew my mum and her mum had experienced. Since then, I’ve had lots of tests and we’ve been slowly trying to figure out what the diagnosis meant for us.
Part of this was the worry that our children would also have inherited mito. Our eldest, George, had a blood test which confirmed he likely had mito too, and genetic testing on both of us showed his percentage of genes affected to be 98%. Mine was initially thought to be 33%, but was subsequently revealed to be 61%. Of course, this doesn’t always indicate how severe your symptoms are.
George was diagnosed around six months after me, and these last couple of years have been a whirlwind. We had already suspected he might have mito when I was diagnosed, because we both have quite short stature and George had delays in his development throughout childhood.
We both currently experience muscle fatigue and weakness, but luckily George is still able to stay active. He even plays for Aston Villa Under 12s disability football team!
We don’t know if our other two younger children, Matilda and Daisy, have mito or how they might be affected. They haven’t had any noticeable symptoms yet, but they haven’t been tested either aside from some precautionary heart testing.
We’ve had to explain mitochondrial disease to so many doctors, and we’ve been trying to raise awareness amongst our own friends and family, but it’s difficult to explain. George himself has understandably asked us hundreds of questions – and there’s so much we just don’t know. The existence of charities like My Mito Mission and The Lily Foundation has helped him to understand, and helped us to feel more supported in this journey.
We enjoy travelling and going on holidays as a family, and George has started to really enjoy fishing with his dad. We have a YouTube channel where we post about our adventures and fishing successes!
…everywhere. People don’t understand how it can affect you, and how different symptoms can be from one person to another.
Any funds raised by the Merryweathers’ 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 the Merryweathers’ Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to the Merryweathers’ mission, choose a way that suits you below.
Regular donations are the most powerful way to support our vital work, allowing us as a small, high-energy charity to plan and build from a strong foundation.
We need a 1000 strong team of amazing people to donate any amount from just £2 a month. 1000 is a lot, but – one by one – we know that we can reach it. Find out more here.
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contact@mymitomission.uk | 0300 102 1112
My Mito Mission is a Charity Registered in England & Wales No. 1212268 at c/o Project Colt, Bridgefield Mills, Elland HX5 0SQ
