Brother pays tribute to men who died in Perth storm after power failure cut their breathing machinesTuesday July 15, 2014 - 15:15 EST
Two men who died when their respirators failed during a major storm which swept across Perth yesterday have been described as "exceptional" disability advocates who lived life to the fullest.
Conor Murphy and Kyle Scolari, both 25, lived together in their Beaconsfield home and had a full-time carer.
The ABC understands the men had muscular dystrophy, a neuromuscular, genetic disorder which results in the progressive deterioration of muscle strength and function, and relied on electronic respirators to breathe.
Western Australian Police have confirmed the coronial unit is investigating the incident, after being called to the men's residence at 7:30am on Monday.
It has been reported that a back-up generator at the men's home failed.
Beaconsfield was one of several suburbs in Perth's south that lost power during the storm.
Mr Murphy's brother Eamon says the family is not laying blame and instead paid tribute to the men, saying they had lived the best lives they could.
"Conor and Kyle had the best care available and lived life as best they could," he said.
Mr Murphy was employed as a staffer in the office of Federal Member for Fremantle Melissa Parke.
"Conor was on a number of committees for electric wheel sporting groups," Eamon Murphy said.
"[He] had degrees in political science and worked for our local member Melissa Parke.
"He had travelled the country and done more than most."
Shocking and devastating: MP
Fremantle MP Melissa Parke said Mr Murphy was an extraordinary young man who was "fiercely independent considering his mobility was limited to just remnant strength in his hands".
"He played sport, was in the Western Wasps, the wheelchair rugby team for WA, participated in interstate competitions, a mad-keen Dockers supporter, loved a beer, never took himself too seriously," she said.
"We just celebrated his 25th birthday together as an office on the 8th of June.
"It seems unbelievable that he is gone, and that he's gone in such incredibly tragic circumstances ... the dependence on something like electricity.
"It's shocking and devastating for everyone who knew Conor and his housemate Kyle - two nicer blokes you couldn't have met."
Eamon Murphy said the men's carer Jeremy Hall had been "amazing".
"Special thanks to Jeremy Hall ... he did an amazing job and [was] an amazing professional carer," he said.
"We are so grateful for his efforts.
"He had been Conor and Kyle's carer for years and was amazing."
During an interview with the ABC's 7.30 program in 2012, Mr Murphy described living with duchenne muscular dystrophy, a hereditary genetic disease that affects mostly male children.
About 45 Australian boys are diagnosed every year.
"If I let the fear totally run my life then I wouldn't have done anything, wouldn't have gone to uni, done, you know, the things I have been which you know is kind of stupid because you might as well live the life that you've got," he said
"Getting upset and being fearful and crying; all that stuff is not going to change the situation you're in. "
Mr Murphy had a double degree in politics and history, and at the time of the interview, played wheelchair sport twice a week.
In the program his mother Lesley spoke of receiving the diagnosis when he was three years old. She was told he was unlikely to live beyond his teenage years.
"I talked to a lot of families who've been in this situation and they all say, without exception, that the day their son was diagnosed is a day that is like tattooed on their head forever," she told 7.30 Report.
"You never forget it. You never forget the feeling, the emotions. It's just, it never leaves you."
She said she lived with grief constantly.
"Your family life is completely destroyed in the sense of what a normal family life, there is none after that," Ms Murphy said.
"You are grieving constantly. You're constantly going around with this loss, a cycle of loss with your son."
In an online piece for the Independent Living Centre of WA dated 18 February 2014, Mr Murphy wrote about how his house had been adapted using assisted electronically-operated technology
"In my bedroom, I use a hoist to get in and out of my electronically-adjustable bed," he wrote.
"On the table next to me, I have a VPAP (variable positive airway pressure) machine and cough machine if required.
"I also have an audio-monitor in case I need anything during the night‚??I can just make a sound and my carer will come. "
Police will prepare reports for the coroner and Western Power says it is assisting police with their inquiries.
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© ABC 2014
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