'Trapped in his body': Aussie dad deteriorates after critical diagnosis

Brisbane woman Sherie McGowen was six months pregnant when she and her family received life-changing news.

Her husband Johnny McGowen, 41, with whom she already had a daughter Darcy, then nearly two, had Amyotrophic lateral sclerosis (ALS), an aggressive and terminal Motor Neurone Disease which causes muscles to stop working.

"It was the darkest and scariest moment in our life. I was holding Darcy in my arms. I fell sick," the 40-year-old mum recalled to Yahoo News Australia.

"I rushed to the bathroom in Johnny's hospital room and he ran in too. I could see the fear in his eyes".

The couple, originally from Ireland, got the diagnosis in September 2021, almost three months after Mr McGowen's symptoms started in July.

A colleague noticed he was talking more slowly than normal which prompted a GP visit, followed by the hospital where Mr McGowen began an assortment of tests.

They were living in Vancouver, Canada at the time spurred on by a job offer for the dad of two — who worked in electrical engineering — but the couple had plans to move home to Brisbane where they met just five years earlier.

However, their plans were brought forward to March 2022 as the usually "fit and active" Johnny deteriorated rapidly, leaving the couple desperately seeking answers.

"He had slurred speech and his right arm was a little bit weaker at that point. He also started having twitches in his arms," Ms McGowen said.

He was starting to lose movement in his fingers and holding things became a struggle.

Family receive heartbreaking diagnosis

After extensive testing, doctors were able to rule out a lot of minor neurological diseases. They also tested him for heavy metal poisoning which often causes symptoms similar to what the "healthy" dad had been experiencing.

"They thought it might have been cancer or a tumour, or a lesion in the brain, but they couldn't find anything," Ms McGowen explained. Which led them to the devastating and critical diagnosis.

"He was in the hospital for about three days. On the last day I went in, about five doctors came in [to the hospital room]. They asked me to sit down and that was the time point that they told us that it's ALS," she said.

Heartbroken mum plans for life without her husband

Now, back home in Australia, 10 months after the diagnosis, the mum is planning a life without her husband who can no longer walk or talk.

He relies on an alphabet chart to communicate and a hoist to help him move. He's also fed through a tube into his stomach.

The dad of two, normally a "very loud" person, can't even hold his daughters, which is "so hard for him," with his wife admitting it "breaks my heart" to see.

Ms McGowen, who's been a full-time carer for her husband and their daughters, was told by doctors how long her husband has to live — but she can't bear to tell him or anyone else.

"Unfortunately there's no cure and there's no treatment, just support. That's the nature of the disease, "she told Yahoo News.

"I had the best relationship, the best life I have ever imagined in the last five years and I was so emotionally smashed because I knew that I'm about to lose it."

Daughters watch their dad deteriorate

The heartbroken mum said it's "been very tough, emotionally and physically", particularly for her daughters — Darcy, now two-and-a-half, and Riley, six months, — who have watched their dad deteriorate.

"It was only six months ago that he was able to take the girls to the park, or go and pick Darcy up from the family daycare," she revealed.

"Now I often find her standing in the corner of the hospital room staring at her dad being fed through a PEG tube or getting stretches of PCR."

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Ms McGowen said her daughter Darcy often asks if "daddy will be ok" and she's now contemplating how she'll support her daughters once their dad is gone.

"He's always been a person who wanted to provide for his family," Ms McGowen said. "We have never seen ourselves in a position to ask for help, for money."

Sick dad begs for help for his girls

In a desperate bid to ensure his wife and girls are looked after, Mr McGowen has set up a GoFundMe page with the goal of reaching $750,000 to go towards a house.

The family is also sharing their story on Facebook and Instagram in a campaign called "Fight for Johnny's girls".

So far, the couple have depleted their savings to help get Mr McGowen better.

His wife said they were willing to try everything "just to get Johnny back," including stem cell treatment, Chinese medicine and homoeopathy — but nothing worked.

Writing on the GoFundMe page, with help from friends and family, the desperate dad-of-two begged for help for his family.

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

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

Ms McGowen, who's currently living with a friend, said she's "terrified" for a life without her husband who feels "trapped inside his body".

With their wedding anniversary on August 10th looming, Ms McGowen said she "feels sick in my stomach" thinking about "how I'm going to get through that day" — as it could be the last.

"It's been getting hard to manage lately," she said.

"I keep telling myself I'm doing this for my girls."

To donate, visit the McGowen's GoFundMe page here.

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