A heartbroken mother who fought to hold her terminally ill son’s hand in a Melbourne hospital has revealed he died on Wednesday, separated from his family and surrounded by machines.
Ben Stylo’s devastated mum said the tragedy pushed her to try to take her own life, after being banned from being by his side in his final moments.
The 28-year-old was born with chronic granulomatous disease – a genetic condition that stopped his immune system from fighting an extremely rare fungal infection he contracted in September 2019.
He died surrounded by wires in the intensive care unit at The Alfred Hospital in Melbourne early on Wednesday morning, having become brain dead earlier that day as he lay in bed alone.
After battling for weeks to get an exemption from the Victorian government, his family were finally allowed a brief visit – but by then, Ben was brain dead and being kept alive by machines.
‘He would have known I was holding his hand if I was allowed to be there,’ Ms Cassar told Daily Mail Australia in an exclusive interview.
‘By the time I got there, he didn’t know who I was. I can’t live with that. I don’t know how to live knowing he died without me holding his hand.’
Ben Stylo (pictured with his mother Rose Cassar) died alone and surrounded by machines in the intensive care unit at The Alfred Hospital
Pictured: Ben with his siblings and cousins. Left to right: cousin Dani, Ben’s brother Noah, Ben, his brother Adam, and cousin Alicia
After months battling the ultra rare contagion, that has infected only five people in the world, the former cafe owner came close to death a number of times from August 1 when it turned septic and spread to his stomach and spleen.
Despite his dire condition, his devastated family were blocked from seeing him for weeks at a time due to strict limits on visitors as COVID-19 spread through the state of Victoria.
Mr Stylo’s shattered mother Rose Cassar endured unimaginable heartache knowing that her sick son was scared and alone in his final moments.
‘When I took him to hospital on Saturday, I knew in my heart it would be the last time I saw him,’ she said.
Unable to cope with her son’s fate, Ms Cassar attempted to take her own life and was admitted to a mental facility.
The 28-year-old (pictured) was born with chronic granulomatous disease – an ultra rare genetic condition that stopped his immune system from fighting infection
Ben Stylo (pictured in hospital) died surrounded by wires in the intensive care unit at The Alfred Hospital in Melbourne early on Wednesday morning
‘It was where I needed to be because I was literally going out of mind knowing my son would die without his family by his side,’ she said.
‘I’m lucky someone found me, but part of me still wishes I had gone so I don’t have to endure the pain of knowing my son died without being surrounded by love of his family.’
What is chronic granulomatous disease?
CGD is an inherited disorder that occurs when a type of white blood cell that usually helps your body fight infections doesn’t work properly.
As a result, the phagocytes can’t protect the body from bacterial and fungal infections.
People with the disease may develop infections in their lungs, skin, lymph nodes, liver, stomach and intestines.
Symptoms usually first appear in childhood, although some do not show symptoms until later in life.
The mother-of-three explained that Mr Stylo’s condition began to deteriorate on Friday when he started having problems with his vision and breathing became difficult.
Having been in and out of hospital all his life due to his weakened immune system, Mr Stylo suffered from post-traumatic stress disorder and was frightened at the prospect of being placed in a ward with no loved ones around.
As a result, he would not tell the nurses he was having trouble breathing – something his mother claims wouldn’t have happened in a coronavirus-free world.
‘Under normal circumstances, he wouldn’t have hesitated to talk about his breathing issues or go to hospital,’ she said.
‘But he was just so scared that he told the nurses he was struggling to breath because of his COVID-19 face mask.’
Mr Stylo was sent home the same day, only to return to hospital on Saturday when his health took a rapid decline.
‘He wanted to wait, but in the end I looked up a couple of symptoms and I told him: ‘I think we need to go to the hospital’.
As she wasn’t allowed to see him after his hospital admission, she called the nurses repeatedly on Sunday to ensure he was eating enough.
Ben Stylo (pictured) in hospital earlier in August as he battled with a rare fungal infection
Ben Stylo (pictured, centre) is seen with his mother Rose Cassar and father Donald Borg in hospital
Mr Stylo’s family lived in terror as he went from having hours to live, to sitting up in bed, to going back on life support (pictured: Mr Stylo with his stepfather Russell)
She went as far as giving the nurses her credit card details so he would be able to eat something from the cafeteria – a request that was denied because he was in a ward with COVID-19 patients.
Frustrated and scared, the mother tried to organise a video call with her son to see how he was going, but the nurses phones rang out every time she called.
When explaining how being cut off from her dying son felt, Ms Cassar broke down.
‘I just felt at that point that we were broken off,’ she said.
‘There was no support. No way of accessing them. I had no way of knowing what was going on and an extreme sense of isolation, knowing in my heart that I would not see him alive again.’
Ms Cassar told Daily Mail Australia that she understands the need for strict rules around visitors
By the time Mr Stylo’s family were eventually allowed to see him in a Melbourne hospital, he was brain dead (pictured, before entering hospital)
Mr Stylo continued to fade as the week went on, but the hospital insisted on denying the family a few precious minutes to say goodbye.
Hospitals in Melbourne allow family members to visit their loved ones under special circumstances – including when they’re close to death.
As the infection moved to his brain, Mr Stylo was able to respond to nurses who told him to squeeze their hand.
Ms Cassar said the restrictions placed on hospital ICU patients and their loved ones are ‘cruel’ and penned a petition to sent to Victorian Premier Daniel Andrews.
‘We would wear PPE suits and we would do a COVID-19 test, but we were shut down at every turn.’
Pictured: Ben Stylo with his grandparents earlier in 2020. Before he died, Mr Stylo was able to respond to nurses who told him to squeeze their hand
Pictured: Ben Stylo with a box of baked good sent from his grandmother earlier in 2020
‘Even a-symptomatic people return positive test results – I didn’t have COVID-19 and neither did Ben, but we were prepared to wear PPE suits – we would have done anything, but we were shut down at every turn.’
Ms Cassar’s battle with health authorities began when her son was first admitted to hospital during the pandemic on August 1.
While she was allowed to ride in the ambulance with him, she was forced to leave his side when they arrived at the hospital.
‘As soon as I got to the hospital, they said you can’t be with him.’
Over the following days, Mr Stylo’s family were terrified as he went from having hours to live, to sitting up in bed, to going back on life support.
At one point, Ms Cassar received a phone call from the hospital informing her that her son’s life was fading.
Ben Stylo is pictured when he was discharged from The Alfred Hospital in Melbourne on August 16
Pictured, left to right: His stepfather Russell, mother Rose, Ben, stepmother Virgina, and his father, Don
The distraught mother ‘begged and pleaded’ to see her son, but was continually rejected.
She tried scheduling video calls but his condition changes so quickly that the opportunities are always postponed.
Mr Stylo was transferred between the intensive care unit and general wards frequently as he drifted between life and death – feeling energised one day and chronically lethargic the next.
During his last bout in the general ward, his mother was granted a visit from the hospital and grew concerned because ‘he didn’t look so good’.
‘He looked sick and he was sitting in his own soil – there was no dignity – and he looked at me and said, “mum, all I want is a shower. I just want to feel clean again”.’
Mr Stylo was often asleep when lunch came, or when the nurses were ready to shower him or let him go for a walk – as a result, he often missed out.
Ms Cassar told Daily Mail Australia that she understands the need for strict rules around visitor. Pictured, left to right: Ben Stylo, his brothers Noah and Adam, and mother Rose)
When Ms Cassar was allowed to take him home on August 16, his condition improved until the infection spread terminally
‘The nurses have so many patients and are run off their feet – I don’t blame them at all, but he needed someone to love and care for him, and all he wanted was to go home.’
As soon as she was allowed to take him home on August 16, his condition improved until the infection spread terminally.
The family, who are originally from Sydney, hope to take My Stylo back to New South Wales for the funeral so loved ones can say goodbye.
A spokesperson for Alfred Health previously said visiting restrictions are in place to protect patients and staff from coronavirus.
‘As visitors are only permitted under special circumstances, our staff are working hard to maintain the connection between patients and loved ones,’ they said.
Melbourne has been forced into strict lockdown after record-high numbers of coronavirus continue to plague the city.
Residents are only allowed outside for essential purposes, including to buy food and care for sick relatives.