A personal tragedy sparked a Yorkshire mum into setting up a charity which could ultimately help millions of people.
Christine Beal co-founded My Mito Mission in Elland, near Halifax, after losing her daughter, Emma, aged 28, to the little known condition Mitochondrial Disease.
It’s complex life-limiting condition but, essentially, mitochondrial are like little battery packs inside every cell in the body converting food and oxygen into energy and if they don’t work properly they can have a major impact on people’s main organs and health.
Mitochondria are fundamental to basic wellbeing and general health but around one in 5,000 people suffer from the condition which makes it one of the most common genetic ones. There is no known cure although research is ongoing, thanks to My Mito Mission and others.
Symptoms can start at any age and can involve any organ in the body with Emma suffering severe problems to her heart and brain.
Christine stresses that mitochondrial dysfunction is now known to be a factor in some of the most common and well-known medical conditions and diseases such as cancer, dementia, Parkinson’s, strokes, sepsis, diabetes, epilepsy and even Covid 19.
“This is why research into Mitochondrial Disease is so critical,” said Christine. “It can help in the treatment and research for many other conditions which is why we say that mitochondrial research matters to millions.
Christine and Peter Beal with their daughters Emma, right, and Beth, pictured in 2012
“Our new slogan is Mito Matters To Me as it really does matter to everyone. How well our mitochondria work dictates our general wellbeing and vitality and how well we age so it really is important to us all.
“The more money we can put into mitochondrial research, the more a lot of other conditions could benefit.”
Christine added: “Although there is no cure for Mitochondrial Disease, treatments to manage symptoms are available and there is active research taking place globally to find treatments and a cure for the underlaying mitochondrial disfunction. Thanks to research, we are learning more daily about mitochondrial disease.”
Christine’s daughter Emma was studying animal science at Nottingham University and was just about to take her finals when she suddenly became ill at the age of 21 in 2010.
She was too unwell to take her exams and spent a month in Calderdale Royal Hospital in Halifax after damage was diagnosed to her heart and brain.
“We were totally oblivious that anything was wrong until this point so it came as a terrible shock,” said Christine. “Even at that early point, doctors thought it could be Mitochondrial Disease as two major organs were impacted but it was another five years before the diagnosis was confirmed.
“We began setting the charity up with Emma very much at the heart of it in summer 2017, but she unexpectedly died in the September and so we launched Emma’s Mission at her funeral with very heavy hearts but knowing it’s what she would have wanted.
“At that time there was a great charity called The Lily Foundation which helped children with Mitochondrial Disease but nothing for adults and Emma was so keen for us to do something for all age groups. People with the illness were feeling so isolated.”
The charity operates very differently from most others in that it focuses on people with the condition and each has their own Mito Mission to raise as much awareness and funds as they can into the condition and research into it.
One of the most poignant mito missions is run by the family of eight-year-old Lillia Sheppard who is unable to walk, talk or eat … but yet is always smiling.
Lillia lives in the Parson Cross area of Sheffield with mum Emma, dad Matt and 11-year-old brother Harrison and Mito has severely affected her, causing severe physical and mental disabilities.
Lillia Sheppard with mum Emma, dad Matt and brother Harrison
After a normal birth all seemed fine until Emma noticed Lillia was having rapid eye movements when she was about five months old.
This led to a barrage of medical tests which showed that Lillia had severe developmental delay and sight problems but the reason for her mental and physical problems remained a mystery.
She had started to crawl, could do some Makaton sign language and even manage a few steps in her walker until she was struck down with tonsillitis when she was three and lost those skills which never came back.
Lillia was finally diagnosed with Mitochondrial Disease when she was five and MRI scans showed a brain issue caused by mito which explains Lillia’s learning disabilities and she also has severe kidney problems.
Her hips were also developing at different rates, putting pressure on her pelvis which could then have ultimately damaged her spine. This meant Lillia had to undergo a double hip operation during seven hours of surgery in September 2024.
She is now tube-fed after mito stopped her stomach and digestive system from working properly and she needs a suction pump to remove secretions otherwise she’d be in danger of asphyxiating. Lillia has no movement and needs to be lifted from her bed to a chair or wheelchair and can’t sit without support.
Lillia Sheppard with brother Harrison
Emma said: “The only way we can explain it in terms of the Mito is that her cells have no energy which means she is continually running on a battery so low it’s always in the red. She is often terribly fatigued and sleeps for 12 hours a day.
“We’re still reeling from how things have progressed. It’s hard learning that something like mito is underlying, with no treatments or cure yet which is why we need people to support Lillia’s Mito Mission.
“What keeps us focused positively, despite the inevitable ‘wobbles’, is Lillia herself. She is the most delightful little girl and is always smiling and happy. She loves school and adores socialising with other children.”
Emma had special praise for Lillia’s brother, Harrison.
“Lillia has the most amazing relationship with Harrison,” she said. “He couldn’t be a better big brother, so protective, caring and helpful.”
Lillia was diagnosed around the time Coronation Street featured a moving storyline about mitochondrial disease.
It centred on Leanne Battersby and Steve McDonald’s three-year-old son, Oliver, who began suffering from seizures which were initially thought to be febrile convulsions. But as they worsened doctors feared a more serious condition. Oliver was diagnosed with mitochondrial disease and the storyline concluded with Oliver’s death after Leanne and Steve made the agonising decision to turn off his life support.
For more information go to My Mito Mission here
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