She died tragically young from a rare form of a little-known condition, but Emma Beal’s legacy is a charity that could help unlock the secrets of many common and feared diseases, including Alzheimer’s and cancer.
The young woman from Brighouse was just 21 when she discovered she had a type of progressive mitochondrial disease, a genetic disorder that affects cell function. At the time of her death, seven years later, she was one of just three people in the world known to have the illness.
While her family and friends continue to grieve for Emma, who became terminally ill and died while on holiday in Turkey last September, they are drawing comfort from a charity that she helped to set up, Emma’s Mito Mission. The charity’s aims are to raise awareness of mitochondrial disease and support research.
As her mother, Christine Beal, explains: “She was an amazing and courageous young woman and founding the charity with Emma was empowering for her. I saw first hand how pleased she was to be doing something - it wasn’t just for her, it was to help everyone. Mitochondrial dysfunction has been linked to everything from Alzheimer’s and autism to ME, fibromyalgia, Parkinson’s, some cancers and many more illnesses.”
Christine, a former Rastrick councillor and personal assistant to the MP Craig Whittaker, gave up work to concentrate full time on running the charity, which she describes as “Emma’s legacy”. So far Emma’s Mito Mission has raised £36,000 which will be used to support patients with mitochondrial disease to set up their own ‘missions’, as well as funding research through the Lily Foundation, a long-established charity founded by a mother who lost a baby to mitochondrial dysfunction.
While there have been high-profile cases of mitochondrial disease – such as that of baby Charlie Gard, who died last year after his parents battled through the courts for the right to take him to America for experimental treatment – most people know little about it or the fact that it takes many forms and may play a part in a number of degenerative diseases.
Emma was in her final year at university, studying animal science, when she became ill. At first the family put her symptoms down to exam stress. But as the symptoms progressed it became clear there was something quite seriously wrong. As Christine explains: “She was having severe headaches, sickness and tremors. When she was tested at Calderdale Hospital they found major issues with damage to her heart and brain. Mito was mentioned, but it’s difficult to diagnose.
“She was referred to the National Hospital for Neurology and Neurosurgery in London and the 100,000 Genome Project. They take samples for genetic testing from a symptomatic child and non-symptomatic parents and can identify the gene responsible.”
Emma got her diagnosis in February 2015 and ended up in the care of The Newcastle Mitochondrial Disease Clinic.
With medication, Emma was able to continue living a fairly normal life and became a carer for people with disabilities. She also looked after her grandfather, who has advanced dementia. But while on holiday in Turkey with her boyfriend, accident and emergency nurse Paul Bates, she became severely ill and died of heart failure during an airlift to a specialist hospital.
She was just 28 and never got the chance to meet the baby her sister Bethany Ellis was expecting and gave birth to just a few weeks later. The little girl, now eight months old, was named Ray Emma Ellis after her aunt and has brought the family joy at a time of great sorrow.
While the mitochondrial disease robbed Emma of the chance to pursue her dream of working with animals, she remained brave and upbeat about what she could do.
Christine says: “The amazing thing about her was her stamina and courage. Doctors would look at scans of her heart and then look at her. They were incredulous that she was on her feet.”
On rare occasions, however, Emma would use a wheelchair and it’s this that has inspired Christine and her fellow ‘Mission’ trustees to plan a major fundraiser in September, which they hope will become an annual event.
The Big Push for Mito on September 16 will see teams of participants pushing wheelchairs from Calderdale Royal Hospital in Halifax to Emma’s GP’s surgery in Church Lane, Brighouse.
The five-mile push will have two aims – to raise money and also highlight the difficulties faced by wheelchair users and disabled people.
As Christine points out, not all disabilities are visible and that causes problems.
She explained: “Emma used to get quite a lot of funny looks and unkind things said to her when she got up out of the wheelchair and walked. But she wasn’t using it because her legs didn’t work but because she had a severe heart condition. People also used to challenge her and Paul when they parked in a disabled parking space.”
The Big Push is now looking for volunteer teams to join the event which is taking place at the start of Global Mitochondrial Disease Awareness Week. Christine has sign-up forms – call 01484 719250 or email her at christine@mymitomission.uk For further information visit www.mymitomission.uk
Mito fact file
Around one in 4,000 people have some form of mitochondrial disease but around 10 million have a condition that is believed to be mito-linked.
Mitochondria are tiny ‘battery packs’ that exist within most cells of the body. Dysfunctional mitochondria lead to a loss of energy and damage to major organs.
Mitochondrial Disease kills more children than all childhood cancers combined.
Because mitochondria have their own genome, diseases relating to them are inherited.
