My family has experienced so much death over the years. I believe everybody has the right to die with dignity. That is based on my life experiences and the hardship that my family has been through since I was a young girl.
At the age of six I lost my biological father. He had Huntington’s disease. He gassed himself in a car. It was outside a children’s school across the road from our house.
My brother Michael Watkins also had Huntington’s disease and passed away. That was heart-wrenching to watch. I cannot even begin to explain how traumatic that was to see my Mum go through that. That broke her heart. It tore her to shreds.
My brother did not have a quality of life for five weeks in hospital. They made him sit there because it is the law. He was 29. He was the only juvenile Huntington’s patient in WA at the time so he was pretty much a guinea pig.
I got to witness the intensity of Huntington’s, the type of suffering he was going through and the changes he was going through. It was horrible to watch.
After that I lost my two half-brothers, who were both gene positive. They were diagnosed in their mid-30s and one of them attempted suicide twice.
And now my Mum. I have lost my Mum. And I have lost her to a broken heart.
My brother Michael had said to my Mum that he did not want to suffer. The guilt that my Mum always hung onto was that she let him suffer and that was something that she could not get past.
Considering all of that, I lead a pretty happy existence and I am full of life and I enjoy life.
I am 39 and pro-choice. I was diagnosed as gene positive when I was 25. I have Huntington’s. My greatest fear is to have to die in pain because I have seen that and I do not want to go through that.
I just want to be able to end it if it gets to the point where I do not have a quality of life.
I do not think anyone has a right to say, ‘You can’t do that, because that’s against the law’.
I just know that when it gets to the point where I do not have a quality of life and I am struggling, when I will not be able to tie my shoelaces or be able to feed myself and I will be falling over and hitting my head, all of that sort of stuff, I do not know when that is, but I do not want to get to the point of my father or my brothers.
I want to be with family and do it on my terms and celebrate my life and do it the right way and say, ‘See you, guys. My time is up. I have done enough’.
Kate McBarron, October 2018