A British mother who was diagnosed with Motor Neurone Disease (MND) made headlines earlier this year for her decision to take control of her final moments.
Emma, 42, from Barnstaple, North Devon, chose to undergo VSED (Voluntarily Stopping Eating and Drinking), a legal method in the UK to hasten death without medical assistance, to spare her teenage children from witnessing the more harrowing stages of the terminal condition.
Now, just one month after opening up about her end-of-life plan, Emma’s Instagram account has shared a final, moving post confirming her passing.
The image shows her lying peacefully in her hospice bed, gazing out at the trees, with a pre-written message to the world.
“If you are reading this, then I've finished my final spin round the sun,” Emma wrote. “I've lived a very good life, surrounded by love, music and laughter, and I want this to continue in my memory. Rather than shed a tear (or whilst you do), please plant a tree or call a friend, do a random act of kindness, or take time to watch a sunset.
“For moments of doubt, please ask, 'What would Emma do?' and run with that probably inappropriate answer. Hug everyone a little tighter and love openly.
“Please surround those who were closest to me with love, time and patience. And to quote Frank Turner - Remember you get to dance another day, but now you have to dance for one more of us. Love you, bye.”
Emma was diagnosed with MND — a terminal neurological disease that gradually weakens muscles and affects movement, speech, and breathing — two years ago. The condition left her unable to perform even the most basic tasks.
“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," she previously told the Mirror.
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,” she said in May, using an eye-gazing machine to communicate.
“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, or 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.”
Despite this, Emma’s decision to pursue VSED came from a place of love. “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,” she explained.
“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.”
Her wish was simple: a calm, peaceful farewell.
“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’s children, aged 15 and 14, were at the heart of her decision.
“My last bit of parenting I can do is to limit the suffering and trauma they have to witness,” she said. “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.”
Before her illness, Emma worked tirelessly as a charity worker, helping hundreds of domestic abuse victims and homeless individuals.
Her advocacy didn’t end there — she became a vocal supporter of the Assisted Dying Bill, calling on MPs to consider the needs of terminal patients and their families.
“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,” she said.
“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…
“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.“
If you or someone you know is struggling or in crisis, help is available. Call or text 988 or visit 988lifeline.org.