Loredana: I am not allowed to die
“My name is Loredana Alessio-Mulhall and I have advanced, progressive multiple sclerosis. I am totally disabled and can’t move anything except my head and my mouth. I have had a catheter for 10 years and a colostomy for 15 years and for me there is no turning back. It is too late for me. Although I can’t move, I feel everything and have pain every day and nerve pain is the worst….I am a very positive person and I only started to think seriously about voluntary euthanasia in the last few years. People who oppose voluntary euthanasia just have no idea and they don’t want to face the reality of my situation, which makes it so much worse for me. I am not allowed to die but I am allowed to suffer.” This is an extract from Loredana’s testimonial included in Go Gentle Australia’s book, The Damage Done (As dictated to Shayne Higson in 2016) – DamageDone_Loredana
Loredana has said that people with progressive or terminal illnesses should be at the centre of any debate. ”I never hear people like me talking about euthanasia,” she said. ‘‘Healthy people are against it. I’m sure I would have been, too, once.” Click for SMH article March 2011
“My mother, Loredana, is a strong, compassionate and intelligent woman and has been suffering from the debilitating effects of MS, since I was 9 years old. She has been graceful, resilient and courageous throughout the last 25 years of suffering this disease and as a family, we fear for the final days of her illness.” Comment by Natasha Mulhall in March 2015
Loredana has said for many years that she is most scared for when the Multiple Sclerosis gets to her voice, and she won’t be able to communicate.“I don’t want to be a vegetable. So once it all goes, I want to die.”
In April 2016 Loredana featured in the final episode of the ABC’s “Keeping Australia Alive” series, a 7 part documentary which serves as a snapshot of Australia’s health system.
In August 2014, Loredana lodged a strong submission on the Exposure draft of the Medical Services (Dying with Dignity) Bill 2014 – submission Loredana exposure draft
Loredana Alessio-Mulhall was one of seven candidates at the launch of the Voluntary Euthanasia Party in Sydney on 19 August, 2013 and ran as a Senate Candidate for NSW in the 2013 Federal election.
In May 2013 Greens MLC, Cate Faehrmann, spoke in the NSW Parliament about Loredana’s circumstances in the Second Reading stage of The Rights of the Terminally Ill Bill NSW 2013.
Faehrmann MLC said “Loredana still has sensation in her body; she just cannot move. She has told me how she can lie awake for hours at night, her fingers painfully clawing her skin. There is no-one there for Loredana at night so she must wait for the first carer’s shift the next morning before her fingers can be pulled away. Loredana continues to tell me she is a positive person and under ordinary circumstances of course she would not want to die but she is very afraid of what is ahead. The multiple sclerosis is now eating away at the nerve endings to her eyes and attacking her voice box. This understandably terrifies her and she knows that her final weeks, months or even years will be spent completely cut off from the world, unable to communicate if she is in pain, unable to speak to her family, unable to do anything at all, at the mercy of everyone and everything. So Loredana was searching for lethal medication in the years before she was totally incapacitated. Her predicament is heartbreaking: “I don’t want to die” says Loredana “but when life gets too difficult, I should not have to beg for mercy, from the people around me, like I am now, to be allowed to die in peace and with dignity.” Loredana is begging all members today to please support this bill. Loredana wants to die with dignity but she needs assistance to do it.”
The following short video of Loredana was made in support of the 2013 bill :
The following short video was made by Gideon Cordover for Dying with Dignity NSW in April 2011, when Loredana was able to speak clearly to explain her wishes.