An Irish father of two has said his family’s world has crumbled after he was diagnosed with incurable ALS but he has vowed to fulfil a final wish to secure them a home.
41-year-old Johnny McCowen was diagnosed with the rare and aggressive Motor Neurone Disease in September 2021. The Laois man has been living in Australia since 2009 and is married to his wife Sherie since 2018. They have two daughters together - Darcy and Riley.
The devoted dad has already raised a staggering sum of money through a GoFundMe page which is approaching $250,000 Australian dollars (just over €160,000).
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Using an Eyegaze computer to communicate, which he said he never imagined he would need, Johnny said: “It was only August last year that I had a good and ‘normal’ life: a secure job, a cheeky, cute two-year-old daughter, Darcy, and my beautiful wife Sherie who had just fallen pregnant with Riley.”
Sherie was six months pregnant with Riley in September 2021 when he says that everything changed “frighteningly quickly.” While living and working in Australia, a colleague asked if he was okay because he was “talking slowly” while a friend from Ireland said the same thing over the phone.
In a GoFundMe appeal, Johnny described appointments after appointments ruling out the causes of his symptoms before being diagnosed with ALS. Johnny described it as a cruel disease with no cure before adding that his is far more aggressive than doctors thought.
In less than a year, Johnny has become unable to speak or walk and is fed through a PEG tube into his abdomen. However, he said that he is still him, “a dad, husband, brother, friend. But I can’t hold my girls.”
Sherie is now a full-time carer for Johnny and their two children while the family's savings have been depleted to cover the cost of Johnny's ongoing care. Johnny and his friend’s set up the GoFundMe appeal to secure a stable future and a home for his family.
In an Instagram post, his wife Sherie has said that they are absolutely blown away by the support and goodwill that their family has received in recent days since starting the campaign.
He said: “I have been fortunate in my life. I have travelled. I am an Irish man through-and-through who moved to Australia, met the love of my life and became a citizen there too. But I was just getting started. My girls are so young. Now we are living a tragedy we couldn’t have imagined.”
"I have imagined such a bright future for them, but I didn't know I wouldn't be in it. They've been through enough. I don't want to leave them without a secure future. That's why we're starting this campaign."
He continued with the help of the technology: "I'm asking for your help to buy a home for Sherie and our two girls where they can grow into the amazing people I won't see, but I know they will be. If they have a home and a secure future, I can rest in peace, and I thank you for this."
Johnny’s GoFundMe appeal can be found here
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