Ben Stylo suffers from chronic granulomatous disease
A heartbroken family have begged to be granted an exemption from coronavirus restrictions so they can see their loved one as he clings to life in intensive care with an incredibly rare disease.
Ben Stylo suffers from chronic granulomatous disease – a genetic condition that only affects five people worldwide and stops his immune system from fighting infection.
In January, the 28-year-old from Melbourne was struck with a fungal infection in his liver, spleen and stomach lining, but was unable to fight it due to his condition.
The infection later spread to his bloodstream and, ten days ago, the graphic designer was rushed to The Alfred Hospital with septic shock.
While his mother Rose Cassar was allowed to ride in the ambulance with him, she was forced to leave his side when they arrived at the hospital due to strict limits on visitors as COVID-19 spreads through the state of Victoria.
‘As soon as I got to the hospital, I didn’t even have a chance to give him a hug or a kiss, they ushered him away and said you can’t be with him,’ she told 9 News.
Ben Stylo is pictured 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 father)
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.
‘I begged and pleaded, please let me come and see him. They said no. Then an hour-and-a-half later I got the call saying you are allowed to see him, special circumstances, he only has hours left to live,’ she said.
While Mr Stylo is currently conscious and alert, his condition continues to deteriorate.
While Mr Stylo miraculously improved and is currently conscious and alert, his condition continues to deteriorate and re-stabolise erratically
The family remain hopeful that he will pull through, but are acutely aware that the situation could take a dire turn
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 family remain hopeful he will pull through, but are acutely aware the situation could take a dire turn and they will only be allowed to see him when it’s time to say goodbye.
Ms Cassar told Daily Mail Australia she understands the need for strict rules around visitors, but said there should be a way for patients in intensive care to see their loved ones during the pandemic.
‘We want the ability to see our son without risking anyone else’s health. We would wear PPE suits and we would do a COVID-19 test,’ she said.
They have tried scheduling video calls but his condition changes so quickly that the opportunities are always postponed.
Mr Stylo’s father Donald Borg told said his son is isolated and losing hope.
The family have penned a Change.org petition to Victorian Premier Daniel Andrews and Health Minister Jenny Mikakos and pleaded with them to change the rules.
‘We do not want any parent to go through what we are going through,’ the petition reads.
‘Help us see our son alive and help other families to not go through what we are going through.’
Ms Cassar told Daily Mail Australia that she understands the need for strict rules around visitor. Pictured, left to right: Ben Stylo, his brother, mother Rose and father Donald)
Mr Stylo’s father Donald Borg told 9 News that his son (pictured) is isolated and losing hope.
A spokesperson for Alfred Health 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.
Ben Stylo’s family have tried scheduling video calls but his condition changes so quickly that the opportunities are always postponed
Ms Cassar told Daily Mail Australia that she understands the need for strict rules around visitors