Emma Bray, 42, has decided to starve herself when her daughter leaves school as she can no longer be the parent she wants to be, determined to shield her children from her ‘brutal’ death
A remarkable mum has just weeks to live after making the heartbreaking decision to starve herself to death when her daughter’s exams have finished.
Emma Bray, 42, who has motor neurone disease, will move into a hospice this summer and voluntarily stop eating and drinking. The former charity worker, who has helped hundreds of domestic abuse victims and homeless people, is determined to shield her “amazing” children, aged 15 and 14, from the “brutal” death she faces.
She says she can no longer even comfort her children with the “hugs they crave”.
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.
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“I’ve had four different health professionals tell me I’ve got the worst disease possible,” she told us.
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 her children 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 us via her eye gazing machine, she said, “I now feel I’m 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, I struggle to eat and it’s getting harder to breathe. I’m only 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 basic tasks; scratch an itch, push up my glasses, move a sheet if I’m 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 b ea parent and I now realise I can’t be a bit of the parent I need and want to be.
Last parental act
“Watching your children grieve for you and not being 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.
“Imagine seeing your children crying and upset and not being able to hug them or wipe their tears away. This is hands down the thing I hate the most about MND. It’s taken my children’s mum from them little by little.
“The last bit of parenting I can do is to limit the suffering and trauma they have to witness.
“I promised myself 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 by voluntarily stopping eating and drinking (VSED).
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 the oral intake of all food and fluids”. They say dying from VSED can 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.”
Emma, from Barnstaple in North Devon, is backing the Assisted Dying Bill because she wants other families to avoid the horrifying decision she’s had to make.
“This bill would have offered me protection for those I love who have already spent two years living with anticipatory grief and watching me suffer.”
Emma explained how five years ago she started having cramps in her hand that prompted a three-year battle to find the cause. Finally, in July 2023, when she was walking with aids, crawling up stairs and unable to drive, she received the “devastating diagnosis”.
“For years, I had been told my symptoms were all to do with stress 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.
‘Worst case scenario’
“I then did some research and became fixated on MND as it matched 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 with me and, as we left, I said I wished it was cancer because there would be potential surgery or treatment, with MND there is nothing.”
Emma knew “straight away” that she wanted “quality over quantity” and her consultant told her to live while she could because the “ending would be very hard”.
But now that end is near, she said,“My wish is to be at a hospice surrounded by my friends and family. I want to have music playing, to hear people laugh and watch them playing card games by me.”
Emma paid tribute to her children, saying, “They are amazing and have spent so much of their childhood witnessing me decline.
“They watched me crawl on the floor, helped me with everything as I have no working limbs, they live 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, they know they’ll have to move house to live with their dad but they don’t know when. That uncertainty is hard for them.
“I 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, “It’s 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 urge MPs to realise that this bill will not end my life, MND is doing that, but they can help me and others with less than six months to live to die with peace.“
If you’re struggling, call the Samaritans 24/7 for free on 116123. Or, email jo@samaritans.org or visit samaritans.org to find your local branch
