Ben Sylo's family are begging authorities to let them see him. Photo / Supplied
Ben Sylo's family are begging authorities to let them see him. Photo / Supplied
It's been 10 days since Ben Sylo's family were able to see him in the intensive care unit of a Melbourne hospital.
The 28-year-old was rushed to The Alfred on August 1 with septic shock.
He has an extremely rare autoimmune condition called chronic granulomatous disease, with only five known cases in the world.
His family are pleading with authorities to let them see him, with coronavirus restrictions permitting no visitors to the ICU.
They are only allowed to see him under special circumstances, which his mum Rose Cassar said was when the patient was going to die, news.com.au reported.
"We fully understand that COVID restrictions are in place to prevent further spread within the ICU ward, which is the last thing we want," she wrote in a petition calling for the rules to be changed.
"But we also believe there needs to be a balanced approach to granting access to patients, especially when there may be limited windows of opportunity to see them."
She said the past week had shown them how fragile life could be.
Six days ago her son was taken off life support and he was able to say hello to his dad on the phone the next day.
But later that day, Sylo's condition deteriorated and he was back on life support.
"Ben's organs were failing," Cassar wrote.
Ben Sylo with his mum Rose Cassar. Photo / Supplied
"We had missed our opportunity. We did not know if we would see Ben conscious again.
"Ben was taken off life support again yesterday, twice in less than five days. Miraculously Ben is now awake, conscious and able to eat, however, there are no guarantees.
"We have rallied as hard as we can for the hospital to allow us to be with Ben while there is this window of opportunity."
Cassar said the family kept getting told the answer was no.
"The current ICU visitation system needs to change to allow families to be able to see their loved ones alive, not for a couple of hours at the end," she said.
Cassar told Nine the situation was "inhumane" and she was losing her mind.
The family are asking that Victoria's chief health officer Dr Brett Sutton change the guidelines.
