A mum who first noticed cramps in her hands five years ago is now planning to starve herself to death after being diagnosed with motor neurone disease, to protect her kids from the brutal death she faces
A mum has revealed how she was diagnosed with a deadly disease after first noticing cramps in her hands – which she was initially told was just stress.
Emma Bray, 42, has motor neurone disease. And she has now made the the heart-aching decision to starve herself to death when her daughter’s exams have finished, determined to shield her “amazing” children, aged 15 and 14, from the “brutal” death she faces. The former charity worker, who has helped hundreds of domestic abuse victims and the homeless during her career, plans to move into a hospice this summer and voluntarily stop eating and drinking.
When she was given the bleak diagnosis two years ago, she was left “howling like an animal” because she realised the impact it would have on her son and daughter. “I’ve had four different health professionals tell me I’ve got the worst disease possible,” she told the Mirror. MND is a terminal neurological condition that affects the brain and spinal cord leading to muscle weakness and wasting.
Now after going on a “bucket list holiday” to the Maldives and having an ‘End of Life Party,’ she has decided the time has nearly come to do her “last bit of parenting” and spare them the horror of seeing their mum suddenly choke to death. Instead she wants a “calm and peaceful death” and has already planned her funeral and written her eulogy.
Talking to the Mirror through her eye gazing machine, she said: “I now feel I am at the stage where my quality of life is very affected, I can no longer use any of my limbs. My talking is severely affected and I struggle to eat and it’s getting harder to breathe. I am only really comfortable in bed and social visits are exhausting.
“I have carers multiple times a day, can’t be left alone overnight and can no longer do any basic tasks. I can’t scratch an itch, push up my glasses, move a bed sheet if I am too hot or cold. I feel like I am losing the essence of me, I am still so loved but I can’t be myself and I see that grief on everyone’s faces.
“This whole journey has been brutal but I have still been able to be a parent and I now realise I can’t be a bit of the parent I need and want to be. Watching your children grieve you and not be able to hug them is the most painful feeling ever. This disease takes from everyone and it will take the children’s mother from them bit by bit.
“My last bit of parenting I can do is to limit the suffering and trauma they have to witness. I made a promise to myself that I wanted to wait to see my daughter finish high school and my son grow up a little so I can picture the man he will become.
“So this summer I will voluntarily stop eating and drinking when I feel ready and I will be supported by a hospice to be comfortable during this time.“ Emma has decided to die using the Voluntarily stopping eating and drinking (VSED) practice.
According to Compassion in Dying this is where an adult ‘with mental capacity to decide to do so and in the absence of control or coercion’, makes a decision to hasten their death by completely stopping all food and fluids. They say dying from VSED can typically take between 10 to 14 days.
Emma told us: “VSED is not an easy death but with the current law in England this is the only way I can have control over my death.
“I want to protect my children from seeing me choke and struggle to breathe. I don’t want to die but I am going to and have come to terms with my impending death and I know I want to die surrounded by loved ones, music and laughter not in an emergency way after further decline.”
Emma, from Barnstaple in North Devon, is backing the Assisted Dying Bill because she wants other families to avoid the horrifying decisions she’s had to make between two “painful and potentially horrific” ways to die.
She said: “This bill will have offered me protection for those I love who have already spent two years living with anticipatory grief and watching me suffer. Imagine seeing your children crying and upset and not be able to hug them or curl up in bed and wipe their tears away. This is hands down the thing I hate the most about motor neurone disease. It’s taken my children’s mum from them little by little.
“They struggle to remember the mum I once was and we all silently agree, as sad as it will be, life will be easier for them when I’m dead.“
Emma explained how five years ago she started having cramps in her hand which prompted a three year battle to find a reason. Finally in July 2023 when she was walking with aids, crawling up stairs and unable to drive, she received the “devastating diagnosis” she had MND.
“I had been told my symptoms were all to do with stress for years and that I would get better. I went to a private neuro rehab in Leeds who instantly told me that it was something more serious,” she told us.
“I then did some research and became fixated on MND as it matched all my symptoms. Going into the consultant appointment MND was the worst case scenario and to hear him say that’s what it was was crushing. I remember howling like an animal when I realised the impact it would have on the children.
“My best friend was in the appointment with me and as we left I said that I wish it was cancer because there would have been potential surgery or treatments, with MND there is nothing.”
Emma explained how she decided “straight away that I wanted quality over quantity” as her consultant advised her to live while she could because the ‘ending will be very hard’.” And she has done just that and still managed to raise £30,000 with family and friends for charity.
But now she says: “My end of life wish is to be at the hospice surrounded by my friends and family. I want to have music playing, to hear people laugh and watch them playing card games over me.”
Emma paid tribute to her children, saying: “My children are amazing and have spent so much of their childhood witnessing me decline.
“They watched me crawl around the floor for a year before diagnosis, they help me with everything as I have no working limbs, they live in an environment where there is a constant flow of carers coming into our home.
“They are obviously struggling. They struggle watching me fade, they are already grieving for the mum I once was. How they are still attending school and laughing astounds me and is a credit to what amazing people they are.
“They have a village of people around them but I know they desperately miss me. They are living in limbo land, they know they will have to move house to live with their dad but they don’t know when and that uncertainty is hard for them.
“I can see their pain and grief on a daily basis and I would do anything to take that away from them. They are desperate for a hug from me and that hasn’t happened in years.
Emma said she is now noticing “a decline every day”, adding: “Its becoming harder to take full breaths, my appetite is small and I struggle to not choke. I hide these symptoms as much as possible so people are sheltered from my reality.
“I plan to stop eating and drinking this summer, my reasoning behind this is to offer the children the best chance to grieve and process without having to concentrate on education. There is never a good time to lose your mum but all my maternal instincts want to make that horrible reality as easy for them as I can.
“I urge MPs to realise that this bill will not end my life, motor neurone disease is doing that but they can help me and others with less than six months to live to die with peace. “
Emma also wanted to praise the MNDA who have part funded a nurse who has become “her rock”.