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Simon, Deborah Binner's husband, is 57 years old when he decides to undergo euthanasia in Switzerland, badisted by a doctor.
The British businessman makes the decision after 10 months of life with motor neuron disease. A rare and unhealed condition that affects the brain and nerves.
Deborah respects her husband's choice, but informs Victoria Derbyshire of the BBC's program that such a decision has devastated her life.
"People would say:" Did not he do a wonderful thing? But I had two girls who were broken, "Deborah said.
Simon went to Switzerland to die in October 2015 in a clinic of the Eternal Spirit Foundation.
He was accompanied by his wife and a film crew.
As a result, the BBC documentary, How to Die: Simon's Choice was "the only good thing that came out of it," says Deborah.
"I was and I am still bombarded by letters from people saying that (watch) was very useful."
"He had this characteristic of being selfless, so he felt that showing his story could help a lot of people," she recalls. and they felt less alone. "
Deborah claims that" Simon's death was not bad, "but he asks," When you open the door for the help of death, "what happens then? "[19659002]" The elderly and lonely, or those who have a lot of money, feel a burden – and something "
Deborah describes her husband as" a whirlwind of people – funny and loyal. "
" I did not want him to tell me. leave it, "she said." It looked like a rock. He has always been on my side. "
One of his daughters, Chloe, died at age 18, three years before Simon.He had an Ewing's sarcoma – a type of bone cancer "
" Simon was diagnosed because he had a strange sensation in the tongue We had lost Chloe a year earlier and I could not believe it was happening. Please, my God, be it a stroke. "Even though I lost Chloe, I could not imagine anything else happening to my family."
Motor neuron disease, such as amyotrophic lateral sclerosis (ALS), is a progressive and incurable disease that alters nerve and muscle function, leading to serious brain and spinal cord injury.
According to the information provided by Ministry of Health of Brazil, is one of the leading neurodegenerative diseases, with removed from Parkinson's disease and Alzheimer's disease
. Its incidence in the population varies from 0.6 to 2.6 cases per 100 000 inhabitants, more prevalent among patients aged 55 to 45 years. 75 years old. "The average survival rate of ALS is 3 to 5 years," said the ministry in the text on the disease published in 2009.
In the case of Simon, a few months after the diagnosis, he could hardly speak. her husband tried to commit suicide twice before agreeing to accompany her to Switzerland.
"When I remember that time – where we lived horror after each other – I found that I had underestimated how much I had been important to have it. Accompanied. "
The British Death Assistance Organization, Dignity in Dying, estimates that a person from the United Kingdom travels to Switzerland to get help at death .
Under the British Suicide Act of 1961, Encouraging or badisting another person's suicide or attempted suicide in England and Wales is a crime and can result in 14 years in prison. Assisted death is also illegal in Scotland and Northern Ireland.
"I did not really bother to break the law, even though we did not want girls to come for it," says Deborah. "I knew we were all working with the best intentions in the world."
Deborah explains that she lived a different bereavement when she lost Simon and Chloe
"Losing a child is something else, you are and you do not want that." Sometimes when I'm happy, I feel guilty Pain reminds you of what you love, "she says
Life Now
Chloe's death was slow, which, according to Deborah, was essential to her life.
"The way Simon died was so different." We wondered if we were doing the right thing. there is no other choice. "
She is now campaigning with oncologists and pharmaceutical industry experts to improve children's and adolescents' access to drugs and reduce the age of participation in drug testing." from 18 to 12.
Deborah also wrote a book about her experiences. "One thing that matters to me a lot is the importance of resilience and making choices," she explains.
"I hope people will think," My God, if she can do it, me too. "That's the main reason I wrote my book and because that I read in the most difficult moments. There is always a choice, whatever the circumstances. "
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