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Irish Mirror
Irish Mirror
National
Michelle Cullen

Irishman diagnosed with fatal disease after work colleague asks if he's OK appeals for help so family have 'roof over heads when I'm gone'

An Irishman has recalled the devastating moment he was diagnosed with a fatal disease when his wife was six months pregnant with their second child.

Johnny McCowen, who now lives in Australia, said his family's "world has crumbled" after doctors told him he had an aggressive form of Motor Neurone Disease, ALS.

The father of two is now desperately trying to raise money to buy a home for his family to provide them with some stability in a future they will have to face without him.

READ MORE: Timeline of Dylan McCarthy's tragic death - reason they were out, apparent motive and garda update

A GoFundMe page was set up in the hopes of raising $750,000 and has already reached over $511,000.

In a post on the page, Johnny wrote: "Sherie, Darcy, Riley.

"My wife and my two baby daughters are everything to me.

"But now our world has crumbled. A diagnosis of ALS - an aggressive Motor Neurone Disease - is causing my body to shut down around me, and it's all happened in just nine months.

"My name is Johnny - 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."

Sharing his heartbreaking story, Johnny added: "It was only August last year that I had a good and 'normal' life: a secure job, a cheeky, cute 2-year-old daughter, Darcy, and my beautiful wife Sherie and I had just fallen pregnant with Riley.

"Sherie and I spent half a lifetime looking for each other, and after getting married and enjoying our first daughter Darcy so much, we were so excited for baby number 2 to come into our lives as we turned 40.

"Sherie was six months pregnant in September 2021 when everything changed frighteningly quickly."

Johnny McCowen with daughter (GoFundME)

Johnny first became aware something may be wrong after a work colleague asked him if he was okay as he was "talking slowly". Alarm bells started to ring when another friend from Ireland pointed out the same symptom whilst on the phone.

This prompted Johnny to go to his doctor, and after several appointments, he was finally diagnosed with the terminal illness.

He said: "Appointment after appointment of 'ruling out' the causes of these symptoms led us to an awful and terrible truth- everything pointed to ALS, a terminal disease. We held onto every hope it was something else.

"ALS is a cruel Motor Neurone Disease and there is no cure. Unfortunately, mine is far more aggressive than doctors thought.

"In less than a year, my condition has deteriorated to the point that I cannot talk or walk. I am fed via a PEG tube into my abdomen.

(GoFundME)

"I'm still me: a dad, husband, brother, friend. But I can't hold my girls.

"Sherie is now a full-time carer to all three of us - myself, Darcy (2) and Riley (6 months old).

"I have imagined such a bright future for them, but I didn't know I wouldn't be in it.

"So I'm asking for your help to buy my girls a home so I know they'll have a roof over their heads when I'm gone.

"They've been through enough. I don't want to leave them without a secure future. That's why we're starting this campaign.

"Please share this with your friends, family and colleagues, and follow FightforJohnnysgirls on Instagram and on Facebook for updates and a place to offer your words of support as we go through this.

"I have been fortunate in my life. I have travelled. I am an Irishman through-and-through who moved to Australia, met the love of my life and became a citizen there too.

Johnny McCowen with daughters (GoFundME)

"But I was just getting started. My girls are so young. Now we are living a tragedy we couldn't have imagined.

"Due to ongoing medical costs our savings have been depleted.

"I am so grateful for all the friends I've made along the way who have supported us.

"I also know it can be hard to know how to help.

"I don't have long.

"Please give what you can to our campaign.

"Thank you for your support,

"Johnny."

You can donate to Jonny's GoFundMe campaign here.

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