Based in West Yorkshire
Emma co-founded My Mito Mission and sadly died unexpectedly just before the charity was launched. Her individual mission became the first of what we hope will be many more. Emma’s family and friends take it forward in her honour and have left her story below just as she approved it. We hope that her kindness, courage and positivity shine through and help to bring inspiration to others.
Hello. I’m Emma Beal, 28, from West Yorkshire. I have a partner, Paul who’s an A&E nurse and we live in Halifax. I love musical theatre, reading, animals, spending time with family and friends and getting involved at the local pantomime each year.
“I had a relatively normal childhood
health-wise but in 2010 during my Uni finals,
I became ill and was hospitalised.”
Two major organs were found to be damaged – my heart and brain – so an underlying condition such as mitochondrial disease (mito) was suspected from an early stage.
There are hundreds of variants of mito. In 2015 the 100,000 Genome Project confirmed I have a very rare form with just two other known cases in the world. Apart from causing fatigue due to the lack of energy my body produces, it’s caused a heart condition which restricts my mobility at times and neurological symptoms such as migraines, balance issues and tremors.
There’s no treatment for mitochondrial disease itself, but my symptoms are currently being managed really well with medication. I live a pretty normal life and work part time with Scope supporting people with profound disability. I also help care for my grandad who has advanced dementia. I love this work and think that having my own health issues gives me more empathy with those I look after and an enhanced understanding of their needs.
Mitochondrial disease is progressive, but I remain very positive and focus
on living life to the full.
Cures for illnesses are found all the time. My Mito Mission is to help increase the chances that a cure can be found in time to help me, and others like me, which helps me to keep feeling hopeful and strong. I hope you’ll be able to help. Whether it’s in a small or large way, I’d be really grateful.
Thanks for reading my story.
1988 - 2017
See more of Emma's journey
with mitochondrial disease
A legacy that
continues to inspire.
Although Emma sadly died at age just 28,
her mission goes on and on.
By the end of its first full year at December 2018 – thanks to incredible support from family, friends and our community – Emma’s individual mission had raised over £50,000 and already made hundreds, if not thousands of people aware of mito. And of how more research may help MILLIONS with conditions which also involve mitochondrial damage such as dementia, diabetes, epilepsy, MS, parkinson’s, sepsis, stroke, some cancers and many more.
Emma's vision was to help others affected
have their own missions too if they wish.
Empowering anyone with mito to raise awareness, funds, support
and above all… hope for a cure.
In its second year, My Mito Mission was thrilled to begin realising this vision by launching two further missions – Regan’s based in the West Midlands and Paige’s in Belfast. Our hope is that they’ll be the first of many more.
Whether you help Emma’s mission or any other … it’s all the same cause. We know Emma would be very proud and her family take such comfort from everyone’s support.
Emma's Mito Mission
Get involved and
support Emma’s cause.
Whether you support Emma’s mission, any other single mission or My Mito Mission as a whole – it’s all the same great cause.
Spreading the word, following, sharing, as well as donating and raising funds are all really helpful and so much appreciated. From running a race to hosting a bake sale, homing a collecting can to giving out Emma’s Mito Mission leaflets – there are so many ways in which you can get involved. Visit our Support Us page for inspiration!
Set up a fundraising page for Emma’s Mito Mission or donate here: