FIERCELY LOVED FIGHTER AND A
Johnny Mccowen, who is battling incurable motor neurone disease, is painstakingly writing letters to his ‘girls’ – his and wife Sherie’s two daughters – so he’ll ‘be there’ for every major moment in their lives
In all the countries he has lived, the places he’s worked, the sports teams he’s played on, and the homes he’s been welcomed into, Johnny Mccowen’s tribe is gathering. They are gathering in Canada, in Ireland, in the US and Australia. They’re hosting bake sales in County Cork, selling raffle tickets in Galway, running marathons in Vancouver, relay races in New York, boxing matches in London and golf tournaments in Brisbane.
And they are doing all of this because Johnny Mccowen, 41, is loved. Fiercely. By his friends and family around the world. By his wife Sherie Jafari, 40. By his two-year-old daughter, Darcy, and his nine-month-old baby Riley, nestled on her father’s chest as it rises and falls.
It is quiet in this room where Mccowen, an electrical engineer lies, his once big world rendered small, the Irishman with the cheeky grin and dancing feet stilled by amyotrophic lateral sclerorism, more commonly known as ALS, and the most common form of motor neurone disease (MND).
A degenerative disease, ALS affects the nerve cells in the brain and spinal cord, causing loss of muscle control, and progressively taking away movement and muscle tissue in the arms, legs, chest, throat and mouth. Eventually – and each case is different – people with this particularly brutal disease lose the ability to stand, sit, walk, eat and talk. There is no known cure, or treatment to reverse its steady march, and the average life expectancy after diagnosis is two to five years. It does not affect the brain’s cognitive abilities, meaning people with ALS know exactly what is happening to them, and around them. The disease creeps up on those it strikes with a whimper, not a bang; a dragging leg, a twitching muscle, a weakened grip. In Mccowen’s case, it was a weakening right hand, picked up by a chiropractor in Vancouver.
“It was June 2021,” Jafari says from the couple’s home in Carina, Brisbane. “We were living in Canada, and because of Covid, Johnny was working from home and he had a bit more time to look after himself.
“His back was a bit sore. He thought from sitting in front of the computer, so he went to a chiropractor, who noticed his right hand was much weaker than his left, so he gave him a rubber ring to exercise it, but it just got harder and harder for him to do it.”
A few days later, in the small apartment where the couple were then living, Jafari noticed a change in her husband’s voice. “I could hear him talking in meetings, and I noticed he was talking through his nose,” she says. “I said to Johnny, ‘your voice sounds different, more nasal” but it was, like the hand, nothing either of us paid particular attention to.” But when a colleague on a Zoom call said they noticed Johnny was slurring, and asked if he was OK, the couple decided to investigate.
“We went to the doctor, who said it might be something, it might be nothing, but we needed a MRI to find out, and Johnny had that in early September last year,” Jafari says.
“It found there was a lesion in his frontal
lobe, but they also found it had no correlation to his symptoms, and that it might have been there for years, and it might be there for years more without changing or growing.”
And so the couple, their little girl in tow, and another baby on the way, went on holiday, a time Jafari now calls their “golden summer”, a film she plays over and over in her mind when she wants to remember how it was.
“We went to Whistler, and Johnny was able to bring three suitcases up the stairs because there was no lift, and he was able to carry Darcy, and it was the most magical and beautiful time,” Jafari says. There is a long pause as she collects her thoughts and her memories.
“That was the last time we lived as a normal family,” she says. Their golden summer over, despite the-then slower progress of his symptoms, Mccowen knew there was something amiss, and on September 14, 2021, at the Vancouver General Hospital, the couple finally learnt exactly what it was.
“When we got back from holiday, Johnny had all sorts of tests done. I always remember Johnny’s face when the doctors told us,” Jafari says. “The thing with ALS is there is no specific test; rather you are diagnosed after they rule everything else out. But we both knew what it meant, and we both started to cry.”
On the way home that day, Jafari made a promise to her husband. “I promised that I would not give up on our family,” she says. “And we promised each other that we would try every single treatment available.”
And so, like so many other vulnerable people who have been dealt a particularly brutal blow, they began the search for a cure, or at least something to buy them time. Family and friends around the world began researching also, surfing the internet, diving down rabbit holes, chasing leads and dreams and hope for their mate Johnny.
First, Mccowen travelled to Los Angeles, where the family had heard of a promising stem cell treatment. The couple used their entire savings for the two-week course of cells delivered daily via IVF, and in the end, achieving nothing. Another contact introduced the couple to a doctor in New York, a homoeopathic specialist who, it was said, had helped others with the disease. This treatment was done via Zoom, at $900 a 15-minute session. Not including the medication. Again, it achieved nothing. There was also some evidence reported online that Chinese medicine was said to slow ALS symptoms down considerably. This time the couple spent hundreds of dollars of leaves and plants delivered in large, plastic packs to their door, and ultimately delivering none of its promise.
“I know we sound a little crazy, ” Jafari notes, “but you go a little crazy because there is no traditional treatment available. So you try everything you can yourselves, and you become, as we found out, very vulnerable.”
In the week before Christmas 2021, the couple went to see their neurologist, who told Jafari there were decisions to be made.
“At this point, I was eight months pregnant with Riley, and Johnny was still able to walk,” she says. “He could take Darcy to the park, he could feed her, and he could still drive, but the neurologist told me, ‘Sherie, in the next six months, Johnny will be using a cane, and you need to consider where you have the best support when your baby comes because Johnny may not be able to help you very much’.”
The couple were already considering returning to Australia – where ALS is more generally referred to as MND – where they had originally met and lived before Mccowen’s work took them overseas. More importantly, it was where they felt they had the most hands to hold them. After speaking to the neurologist, they booked their ticket to Brisbane, a fortuitous decision because Mccowen’s decline was far quicker than the neurologist could have imagined.
Just one month later, in late December, Mccowen fell walking, and by the time Darcy was born, he was in a wheelchair. “Johnny was next to me on the chair when our baby was born, and they gave Johnny warm blankets because he was so cold,” Jafari says. “He was holding my hand through the birth, and he couldn’t stop crying, because it was so beautiful but he was carrying the pain in his heart at what her life would look like, and that she would never know her father as he was.”
For the next three months, before their return to Australia, members of Mccowen’s tribe flew from Australia, Canada and Ireland, staying at a nearby Airbnb, and using a roster system to help the now-parents of a toddler and a newborn.
“There were 24 people in total,’’ Jafari recalls. “They came every week, coming on a Friday and leaving the next Saturday using spreadsheets, and a handover system to let the next person know what was needed.
“They did daycare runs, and made us breakfast, they took Johnny to appointments, they even knew what coffee I liked. It was all of Johnny’s childhood friends from Ireland, his brother and sister, as well as friends from Australia and Vancouver, and I will never forget that feeling of not being alone in this and that feeling of how much Johnny is loved.”
The Mccowen family finally flew home to Australia on March 30 this year, returning to the place their own love story began under a sky exploding with light and magic, and actual fireworks. Riverfire, September 2016.
“Johnny and I met through on a social media
site”, Jafari says with a smile, “and we were both each other’s very first match. It seems unbelievable to me now, especially as I really wasn’t expecting much, but that was it. A friend had put me on the site because all I really did was work. I am originally from Iran, and I moved to Australia in 2009. I studied graphic design and then I shifted careers into retail and I was working pretty hard when I met Johnny. I was 35 and Johnny was 36 and I don’t think either of us were really thinking we would fall in love, but we did, and we did quickly.
“I felt comfortable with him straight away, our first proper date after our initial meeting was at a restaurant during Riverfire, and there were fireworks in the sky, and without sounding too cheesy, there have been fireworks for me every time I look at Johnny ever since.”
A year after they met, they became engaged, marrying in August 2018 and moving to Vancouver, where Mccowen had found work as the regional manager of an engineering firm.
Darcy was born in October 2019, Riley in January 2022, and in between, the couple grew their life together. Theirs is a tight unit, bound by love and gratitude. Even now. Especially now. “I fell in love with Johnny for the same reasons everyone else does – he was so kind and so honest,’’ Jafari says. “He talked so much about his family, they meant everything to him, which is the same with Iranians. He doesn’t try to hide his emotions, or be cool. He told me after four weeks together, ‘Sherie, I’m falling in love with you’. And I told him the same. I’m still falling in love with him. I have enjoyed every single second with him.”
In the bedroom that has mostly become his
home, Mccowen is writing letters. He is writing to his daughters for their birthdays. Their wedding days. He is writing his father-of-the bride speech. And he is writing a love letter to Jafari. It is taking him a long time to do this because he has no movement in his hands, or arms, or any other part of his body.
But his eyes can move, and they dart across a screen in front of him, tracking words and commands on a machine known as an Eye Gaze. These words are then made visible on the screen, or audible through a microphone, and it means that Mccowen can tell people what he’s thinking, what he wants, what he needs, or more often than not, how much he loves them.
When I visit the Mcgowens at their home, Jafari shows me a short video made on their wedding day. She is a radiant, Audrey Hepburnesque bride, and he is handsome and smiling in his buttonholed suit. “I just saw your wedding video”, I tell Mccowen, lying still in his bed. “Sherie is so beautiful.” His eyes dart to the screen. “Still is,” it flashes.
In the next room, one of Mccowen’s carers, Lorcan Trehy, is talking quietly with Jafari, running through his patient’s – and mate’s – needs for the day. One of Mccowen’s Irish tribe in Australia, Trehy met Mccowen through a mutual friend. Already working as a carer, when Trehy heard of Mccowen’s illness, he quit his then-job to help care for his mate under the National Disability Insurance Scheme (NDIS).
“We could not do what we do without the NDIS,’’ Jafari says. “I’d like to say how grateful we are for it. I could not look after Johnny or the girls without it.”
Through the NDIS, Mccowen, assessed as extremely high need, has access to support for up to 14 hours a day. Carers arrive, usually in pairs, at allotted times to use a special hoist to lift him from his bed for bathing, toileting, and dressing. He is fed four times a day through a tube in his stomach, and he is taken out for one hour a day in a wheelchair. He needs help with his medication; he needs help if he has an itch to scratch, if his toes get cold, if his mouth feels dry.
Mccowen needs help mostly all of the time, and his carers are there to give it. Some, such as Trehy, were already friends; the others have become so. Sometimes they just sit with him watching TV, or his beloved football club, Liverpool, play.
The house the family are living in belongs to a good friend, Aimee Beheshti, who has taken the family in – hospital bed, hoists, medical equipment, carers round the clock, children underfoot and all. And when this fighting Irishman succumbs to the disease, his friends are determined that “Johnny’s girls”, as they are known to all who love them, will be provided for financially. They have started a Gofundme account, “Fight for Johnny’s Girls”, also an Instagram account @fightforjohnny’girls, specifically to raise enough funds for Jafari to buy a house.
At the time of publication, the account, with all that fundraising around the world and donations, has reached a remarkable $640,000 of its $750,000 goal. The loss of his job and the continuing medical costs of treatments have meant Jafari – who has had to quit her work – has very limited funds herself.
“I’ve been thinking a lot about life, and how I’ve learnt to live in the present, ”Jafari says.
“When this first happened, I used to think a lot about the past, about how we were, and the future, about how it might be, but now I realise how important it is to just wake up every morning and appreciate all that we do have.
“ALS hasn’t changed Johnny; he’s still exactly the same person. Anytime I go into the room, he asks how I’m feeling, how are the kids, how is Darcy doing at daycare, how everyone else is faring. That is Johnny, always thinking about others, rarely himself, even now.” As for the future, Jafari says she is readying herself for that too. “I don’t want Johnny to be in pain or discomfort, and I want everything to be on his terms, so I will do whatever he wants,” she says.
“We have a little bell he can ring at night by moving his head a fraction. It is highly sensitive, and it then rings under my pillow at night, so I can get up and put another blanket on him, or scratch his nose. And I could do it forever.
“Johnny has told me he would do anything to stay, and we would do anything to keep him.”
One day, Sherie Jafari will read Johnny Mccowen’s letters to his children. She will do so until they are old enough to read them themselves. When they leave school. On their 18th birthdays. Their wedding days. Their father is writing letters for every major moment in his daughter’s lives. Each one takes him hours, eyes darting across the screen to say all that is in his heart. Right now, Johnny Mcgowen’s life is small, reduced mostly to this bedroom in a friend’s house. But one day, Darcy and Riley Mccowen will read their father’s letters and know he had a big life, and a big love for them, and their mother, Sherie, and as beautiful as that golden summer they once shared.
Johnny has told me he would do anything to stay, and we would do anything to keep him