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My family has been decimated

22 January, 2020

My family has been decimated: Three generations, and more than a dozen people who carry the c9orf72 gene for Motor Neurone Disease (MND).

My family has been decimatedMy mum died of this in 1993, aged 45. I am one of three girls, barely out of school, who nursed her at home, one our own, until the end.

We sticky-taped her eyes open and fed her by stomach tube. My youngest sister was 16.

My mum begged us to kill her daily as she was paralysed from the nose down for three years.

Her own mother and uncles had died of the same disease.

In the last days, mum refused all fluid and died from dehydration. I am now 51 and have lived longer than the three generations of women before me.

I am not brave, I am terrified, just like my mum and grandmother.

There has to be a safeguard for people like me, who know their ending whilst alive.

In memory of my mum, please allow voluntary euthanasia. 

Sharon Johnson, Kwinana WA

August 2019

 

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