Battler at centre of hospital fight dies at 28
A critically ill man at the centre of a desperate fight to overturn restrictions on families visiting loved ones at a Melbourne hospital has died.
Ben Stylo, 28, a Melbourne cafe owner, passed away in an ICU ward early on Wednesday.
"Ben has left us," his mother Rose Cassar said. "We are shattered."
Mr Stylo had a long battle with chronic granulomatous disease, a genetic condition which prevented his immune system from fighting infection.
He was rushed to the Alfred Hosptial in early August with septic shock.
However, with visitor restrictions caused by the COVID-19 pandemic, Ms Cassar discharged Mr Stylo from the Alfred Hospital last week in a bid to change rules to allow families to visit loved ones.
She also started a petition on change.org asking Chief Medical Officer Professor Brett Sutton to overturn visitor restrictions.
Mr Stylo told the Herald Sun last week: "The nurses are overworked. All I needed was my mum, a carer to do the simplest things nurses can't do because they're too busy."
Last week, Mr Stylo was transferred to a relative's home to be cared for by his mum and by The Alfred's Hospital in The Home program.
But his health deteriorated at the weekend and he was readmitted to hospital.
He died with his mother, Rose, and partner, Alex, at his side.
"He fought this medical demon right to the very end with courage, strength and compassion for those around him," his family said on social media late on Wednesday.
Mr Stylo was taken off life support twice while in ICU last month, and fought back on both occasions.
"His way of coping with these difficult moments of his life always gave us hope he was going to beat this. Pain can no longer find Ben now and that is the only comfort we have. He can reach the stars and be free to do what he likes," his family said.
"Our beautiful talented young man has been taken, way too soon."
The family thanked medical teams in Australia and the US for treating Mr Stylo.
"Working under these conditions are difficult at best but no one saw what this year has brought," the family's statement said. "We are further saddened that nobody was given access to be by Ben's side during his last days."
Last week, in response to Ms Cassar's calls to change visitor rules, a spokesman for Alfred Health said: "We understand the necessary visitor restrictions do make this a more challenging time, both for our patients and for carers wishing to see and support their loved ones in hospital.
"Visitor restrictions are common to Victorian hospitals right now, and are in place to protect our vulnerable patients and our staff while there is a sustained level of COVID-19 in the community.
"We've had instances of asymptomatic carers asking to visit, and then discovering they have COVID, so we know we need to be incredibly vigilant to keep our hospitals safe in order to keep all patients safe, and to protect our specialist staff as they continue to provide care."
The spokesman added: "As visitors are only permitted under special circumstances, our staff work hard to maintain the connection between patients and loved ones. Daily briefings and telehealth sessions also ensure families are up-to-date and involved in care decisions.
"These changes are about keeping our hospitals as safe as we can as we work through this pandemic together."
Visitors are allowed for compassionate reasons such as end-of-life decision-making and support.
Originally published as Battler at centre of hospital fight dies at 28