A Southern Highlands family has pleaded with the Victorian department of health to let them visit their critically-ill son.
Twenty-eight-year-old Ben Sylo is currently in the intensive care unit at The Alfred Hospital in Prahan.
Ben's parents and step-parents are staying two kilometres away from the hospital but have been denied access to their son due to a strict no visitor policy in ICU due to COVID-19.
His mother Rose arrived on June 15, while Ben's step-father Russell, father Donald and his partner Virginia arrived on August 1 when Ben went into ICU.
Their son, who was previously a student at St Joseph's Catholic High School in Albion Park, has a rare immune deficiency called Chronic Granulomatous Disease.
Due to his weakened immune system, Ben contracted a rare fungal infection called Invasive Aspergillus in his liver, spleen and stomach lining.
Due to their son's condition, the parents have applied to visit him on compassionate grounds as soon as possible.
They have not received an official response from the hospital or department of health yet.
Ben was intubated but as of Wednesday morning, he was stable and the tubes were ready to come out of his body.
His parents now hope his organs are strong enough to keep him alive.
Ben's parents have offered to pay for their own personal protective equipment to mitigate concerns of potential COVID-19 spread.
They are also willing to abide by every precaution necessary to visit their son.
"There's more chance of my son getting coronavirus from a doctor or nurse who has been with an [infected] patient," Rose said.
"This is going to affect other families. They need to change the way they're doing things and make facilities available for people to see their loved ones."
Ben's condition changes by the day. He was taken off life support on Sunday, and he was awake on Monday morning.
By the time a scheduled video call was due, Ben's condition had deteriorated and he had to be placed back on life support.
His parents were subsequently told by doctors they could not see him.
Ben has had a long battle with serious illness.
He was previously in the United States from September 2019 to March 2020 for a bone marrow transplant.
"They couldn't do it here because Ben's case is rare. There are only five known cases in the world, four of whom have not survived " Rose said.
During his time in hospital in the US, Ben had to be placed on life support.
"There was nothing we could do. All we could do was pray," Rose said.
"We prayed by his side day in, day out and every night. We believed that's what saved him."
Rose said the family would like to pray by his bedside and place rosary beads on his liver.
"We want to be there for him now and we want to pray," she said.
"I know when we spoke Ben's eyes would prick up. He responded to family voices, not doctors."
Family hopes to be by Ben's side
Russell said while hospitals dealt in "statistics and numbers", there was also a human element to care.
"Rose would like to be by his bed so they can hear a prayer with a priest," he said.
In a letter to the department of health, Rose said holistic care was vital for her son's condition.
"Please let us see our son when he is awake, please let us be near him so he can see us. We want to see our son when he is alive not when it's too late," she said.
"Please, we have asked for compassion, we are begging to see our son. Please help us.
"This is time pertinent and we are concerned he may die at any time. His emotional wellbeing during his critical illness is important to him and us."
Ben has a cafe in Melbourne and while he has been in hospital, he has still taken care of his staff.
His parents have paid the staff on his behalf while he has been unwell.
A spokesperson from Alfred Health said they understood "what a challenging time this is for families wishing to visit a loved one in hospital".
"The visitor restrictions at The Alfred, which are common to many Victorian hospitals right now, are there to protect our vulnerable patients and our staff while there is a sustained level of COVID-19 in the community," the spokesperson said.
"As visitors are only permitted under special circumstances, our staff are working hard to maintain the connection between patients and loved ones.
"Daily briefings and telehealth sessions also ensure families 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."
The spokesperson said the Alfred ICU is one of the largest in Victoria with 50 beds and cares for many of the state's sickest patients.
"Clinical staff connect with the Mr Sylo's family at each shift, and offer telehealth sessions daily. Other units are also providing remote support," they said.
"Our visitor guidelines are consistent with advice from the Victorian Department of Health and Human Services.
"Visitors are permitted for compassionate reasons in the instance of end-of-life care decision-making and support."
Visit the Ben's Bone Marrow Transplant Facebook page to stay up to date with Ben's journey.
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