Hello. Our story shows how mitochondrial disease can impact across generations and affect people very differently, even within the same family.
My gran on mum’s side was 1 of 10, who all died young with no known reason. My mum, Ruby is 1 of 5… so we’re a large family!
In 1994, mum’s second oldest sister’s son Wullie, 20, collapsed and died suddenly while out on a walk. We were advised a genetic illness was involved and all the family may be affected.
Mum and I (her only child) then 12, were the only ones who went for testing at that time. I was so excited to take a helicopter to Elgin! Even though we were both asymptomatic then, the results were that mum had ‘mitochondrial cytopathy’ and that I had ‘MELAS’. At the time, it was thought that adults could not have MELAS.
I married in 2001 and my daughter Shishi was born the following year, then Jaeden in 2005. Shishi was tested as a newborn.
It confirmed she also had the MELAS gene fault 3243A>G .
Gradually, more wider family were tested and diagnosed. And tragically, more young deaths and illness followed. My cousin Sharon died aged 21 in 2008 on Jaeden’s 3rd birthday. Her sister, Michelle had previously experienced a stroke at 19.
Rubyn was born in 2013, completing our family. He was tested in 2017 and diagnosed. In 2016 we lost my cousin Johnny, aged 37, with whom I was really close, then Laura in 2021 aged just 28.
Mum’s 63 now and aside from severe arthritis has diabetes, hearing and vision loss, ulcers and poor balance requiring walking aids. She’s regularly hospitalised and last year was in a coma and not expected to pull through. Thankfully, she did.
At 42, I also have fatigue, diabetes, hearing loss I wear hearing aids and vision loss but manage okay and am mum’s carer. I love to socialise and find doing diamond art and colouring really therapeutic.
Shishi kept largely well until 3 years ago.
Thankfully Shishi has regained these functions now and is set to move in with her boyfriend Ryan soon.
Jaeden has few mito symptoms but has other health challenges including autism and tinnitus. He’s studying horticulture at college, is learning to drive, and loves gaming.
Rubyn gets sore legs and migraines and struggles to grip a pencil or pen. He’s an avid game and tv watcher.
We’re all under the Specialist Newcastle Clinic as well as seeing a genetic nurse more locally in Perth.
… and how it can affect individuals and families. Even our GP is honest about not knowing much about it and it can be very hard to explain.
Being a part of the My Mito Mission team will bring us more opportunities to meet with others impacted by mito and compare our experiences and journeys.
Any funds raised by The Singh Family’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 The Singh Family’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to The Singh Family’s 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.
For any other amount or frequency (eg weekly, quarterly, annual), simply contact us
We’d love your support with our fundraising… and we can provide supporting materials. Just ask!
Fundraise and shop!
Other ways you can support us
Visit our Support Us page for more inspiration!
