Sadly, Emma died unexpectedly of heart failure caused by mitochondrial disease just before the charity was launched. She was very much at the centre of setting up My Mito Mission and inspired her family and friends to carry on in her name. We have left Emma’s story below just as she approved it and 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.