Hawthorn Football Club Coach Alistair Clarkson has inadvertently raised the profile of ther serious illness Guillian-Barre syndrome. Closer to home, a Nullawarre family knows first-hand how serious the auto-immune condition can be RACHAEL HOULIHAN reports.
NULLAWARE’S Bevan and Cloe Marr know all too well the effects the debilitating Guillian-Barre syndrome (GBS) can have.
A dairy farmer, Mr Marr was diagnosed with GBS in January.
He returned home from hospital on April 17 to his wife Cloe and their 11-month-old daughter Alice after fighting the condition for more than five months.
Cloe and Bevan were high school sweethearts and married in 2011.
They had travelled overseas together before buying a home in the quiet country town. Alice was born last year and Mr Marr was working on his wife’s parents’ dairy farm when the condition struck.
He had started pre-season training with Timboon Demons football club and Mrs Marr said he was healthy.
“He was a fit 24-year-old father of a six-month-old baby and we didn’t know what was going on,” she said.
“It was terrifying. He went from being completely independent to being completely dependent.”
Although Mr Marr walks with a cane, it is a long way from being paralysed like he was only a few months ago.
According to the National Institute of Neurological Disorders and Stroke website, Guillain-Barre Syndrome (GBS) is a disorder in which the body’s immune system attacks part of the peripheral nervous system.
Symptoms include varying degrees of weakness or tingling sensations in the legs and in severe cases, paralysis, making the condition life-threatening.
“I was diagnosed with GBS on the 21st of January,” Mr Marr said.
“Prior to that for two weeks I was feeling like I had flu symptoms: a sore throat and a bit of a snuffy nose.”
“He was a fit 24-year-old father of a six-month-old baby and we didn’t know what was going on,”Cloe Marr
Mr Marr went to the doctors in Timboon when he found himself short of breath after knocking out a wall in his house. The initial diagnosis was a reaction to dust in his lungs from the plaster sheets.
He went home and continued to get worse, before going to a doctor in Warrnambool, who believed he was suffering from severe anxiety due to an upcoming hernia operation.
After returning home from that appointment he was physically sick, had altered sensations in his hands and feet and was again short of breath.
Mr Marr returned to the Timboon clinic and visiting Geelong doctor Nouman Quadir suggested he may have GBS. After an explanation that it was life threatening, he was rushed in an ambulance to South West Healthcare.
There is no test for GBS and after eliminating all other possibilities, Mr Marr was moved to the intensive care unit overnight before being transferred to the Geelong Hospital.
“I went from being able to walk to not being able to swallow or roll over in bed,” he said.
“My breathing got really bad and I couldn’t breathe by myself. I spent one night with the oxygen mask and I was still deteriorating. It was the worst feeling.”
Mr Marr was put in an induced coma for three days.
“He was completely paralysed from the eyebrows down,” Mrs Marr said. “He couldn’t communicate to anyone.”
Mr Marr was on life support for 35 days and slowly found a unique way to connect with his family and friends.
“I could only blink my right eye. I blinked once for yes and twice for no,” he said. “It was very depressing. I didn’t know how long I was going to be laying there for.”
After almost six weeks the life support was gradually shut off and he was encouraged to breathe on his own.
Mrs Marr and Alice were back and forth from the farm and family and friends rallied around to help.
“It was a life-changing event that happened to Bevan,” Mrs Marr said.
“He had a lot of really dark days.”
She said Mr Marr even managed to send flowers to her on Valentine’s Day with the help of his sister and an alphabet communication board.
“For the whole 35 days there wasn’t a day that I didn’t have a family member there,” Mr Marr said. “My wife and daughter, my mum and sister. That was one of the best things.”
The first movement he got back was a finger wriggle.
He moved to the Grace McKellar Rehabilitation Centre in Geelong on March 7, a day before his 25th birthday.
“I remember saying to the nurse that I wanted to get to the rehab centre before my birthday. She said ‘I don’t like your chances’, but I made it.”
He spent a further six weeks completing rehabilitation sessions and graduated from being able to push his wheelchair, to using a walking frame and then walking with a cane.
Mr Marr made a pact with himself that he would return home when he was able to put his socks on and shower himself.
“Probably getting home was when I started to feel the best,” he said.
He acknowledges that it will be a big effort, but he is hopeful to be playing football again next year for Timboon Demons.
The lowest point during his time in hospital was not being able to communicate with his daughter.
“I remember saying to the nurse that I wanted to get to the rehab centre before my birthday. She said ‘I don’t like your chances’, but I made it.”Bevan Marr
“When I was coming home from milking I would walk in and Alice would give me the biggest smile as if to say ‘dad is home’,” he said.
“When I went into ICU, when she first saw me she would give a big smile but after being in a coma the smile went away.”
One of his goals was to hold his daughter again and he said it was the best thing when that happened.
Mr Marr thanked family and friends who supported him on his road to recovery.
He encouraged anyone with symptoms to go to the hospital straight away.