Alison's

Mito Mission

Based in Barnsley, South Yorkshire

Hi, I'm Alison and I'd love you to read my story about an eventual diagnosis with mito which helped solve long standing medical mysteries within my family.

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Read Alison’s
Story

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Mission

Alison's

Story.

May 2023

Like my mum before me, I was diagnosed with a hearing impairment at around 5 years old. By the time I was 8, my mum had further concerns about my health – specifically, my balance and coordination. I struggled to ride a bike, catch a ball and fell often.

A trip to our GP brought a referral to Sheffield Children’s Hospital. I underwent a barrage of tests – a spinal tap, x-rays and biopsies.

They could see things weren’t right

but couldn’t pinpoint the cause.

MS was mentioned as a possibility.

In 2003, my lovely mum died from breast cancer. Years passed. Then several family members – all with similar symptoms to mine – started to receive the same diagnoses … mitochondrial disease. Like most people, I’d not even heard of it.

I had genetic blood testing at Barnsley Hospital in 2014 and got the same diagnosis.

We were very lucky to have amazing doctors and other health professionals around us though to support his medical needs.

In February 2014 we were offered to be part of a Mito Exome Sequencing Study by Newcastle University. Two years on we received confirmation that a mutation in ATP5D was responsible for Aiman’s problems’. A genetic fault passed from Usman and I meant his body couldn’t produce enough energy for cells. It was actually a relief to get an official diagnosis so we could understand the reasons behind the way he is and how to manage his care better.

It’s a variant called MELAS, short for

‘Mitochondrial Encephalomyopathy, Lactic acidosis and Stroke-like episodes’.

It passes down the maternal line and so can be very prevalent across families, like ours. I was referred to the specialist clinic in Newcastle and am now passionate about helping any research projects as much as I can.

My other passions are my 3 cats – I’m nicknamed the ‘cat lady’! And I love reading and spending time with my family, especially my children Sam and Summer, stepdad Philip and brother Shaun (pictured with me at the top of the page). Shaun also has a mito diagnosis. Summer’s 23 and has hearing problems but Sam, 27 is fine.

My mito mission is to help

improve people's awareness

… and understanding about mitochondrial disease and also about the importance of mitochondrial research to millions of people.

Mito research could bring

treatments for many illnesses

… as well as mitochondrial disease. This increased awareness will help to reduce the terrible isolation people feel when they have mito.

Any support for my mission

will be truly appreciated.

Alison's Mito Mission

Get involved and

support Alison’s cause.

Any funds raised by Alison’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 hosting a bake sale, homing a collecting can to giving out Alison’s Mito Mission leaflets – there are so many ways in which you can get involved.

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

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Strengthening the future of mito awareness, support and research.

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.