A woman suffering from a rare medical condition that affected just three people in the world has died.
Emma Beal, from Halifax, had a progressive mitochondrial disease - a condition that affects cell function. Her illness was so rare that only two other people in the world, a pair of siblings in Finland, had been diagnosed with it.
The 28-year-old’s condition worsened while she was on holiday in Turkey with her fiancé Paul Bates and she passed away in the country last Thursday.
Her mum Christine Beal, a Rastrick councillor, paid tribute to her ‘beautiful and courageous’ daughter.
She said: “Tragically we have just lost our beautiful and courageous elder daughter, Emma, to a devastating illness.
“Emma lived her life with the utmost grace, positivity, non-judgement and compassion. She genuinely never would say a bad word about anyone, even those who may not have served her well.
“She worked at the council for a very short while but spent the last two years or so caring for people with profound disability with Scope, to the extent her illness allowed.
“She was also an angel in looking after her grandad who has dementia. She loved to care for others despite being so desperately ill herself and we are so immensely proud of her.
“Emma’s close family and I will remain ever grateful for all the kind support we are receiving and know we’ll continue to receive from our wonderful extended family, friends and wider communities of Rastrick, Brighouse and Calderdale.”
Animal science graduate Emma first became ill in May 2010 while sitting her final university exams.
She suffered from constant headaches, as well as fatigue, tremors, lost full control of her bodily movements as well as osteoporosis and balance problems.
After visiting Calderdale Royal Hospital, she was found to suffer from a serious heart condition called hypertrophic cardiomyopathy, as well as a condition called leukodystrophy - a condition where white matter on her brain affects her nervous system.
Further testing revealed a diagnosis of a mitochondrial disorder called Combined Oxidative Phosphorylation Deficiency 16.
Last week, the Turkish government arranged for Emma to be airlifted to a hospital in Izmir at no charge.
The Turkish medical team treating her liaised with a specialist mitochondrial team in Newcastle as she was taking part in a genetic research programme and wanted to donate tissue.
Christine, her husband Peter and Paul’s mum Sue flew out to Turkey and were by her side when she passed away. They are flying home today (Thursday) and Emma’s body is currently awaiting repatriation back to the UK.
Now, a charity has been launched by her family and friends.
Christine said: “I ask readers to consider supporting our new charity which is to raise awareness and funds for mitochondrial research so a cure can be found.
“Emma was very much a part of setting up the charity and loved the idea of being able to do something positive when there was so little else that could be done.
“We never dreamed that its launch would coincide with her death but we will take strength from her strength, and launch very soon with her in spirit.
“‘My Mito Mission’ will enable anyone with mitochondrial disease to be at the heart of their own mission to raise awareness and funds. ‘Emma’s Mito Mission’ will lead the way.
“Please look out for www.mymitomission.uk and facebook.com/mymitomission or call and leave a message on 01484 719250 so we can send you written information when it’s ready.”
