THE American Motorcycle Club Coalfields Chapter has been praised for treating some special visitors at Rathmines to a day they won’t forget.
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Club members called in at the Catalina Lakefront Retreat recently to meet the 35 visitors who were staying at the venue as part of the biggest ever national gathering of people with the rare genetic disorder, Cohen syndrome, their families and carers.
Club members treated the visitors to a ride on their motorycles, and even brought and cooked a barbecue lunch for everyone.
“These guys need to be commended. They have hearts of gold,” event organiser, Linda Bobeth, said.
“One of the guys contacted me and said they saw our story in the paper. He said ‘I didn’t realise what you were up against. Whatever you need, we want to help’.”
Ms Bobeth’s daughter, Amy, 34, was diagnosed with Cohen syndrome in 1993.
She is thought to be the first person in Australia diagnosed with the disorder.
Cohen syndrome causes intellectual, physical and visual impairment. But little is known about the condition.
“We haven’t yet figured it out, and it’s really hard to diagnose,” Ms Bobeth said.
It’s estimated that there are only 600 to 1000 people worldwide who have been diagnosed.
“In the whole time I’ve known about it, I’ve met only two medical professional who had heard of Cohen syndrome,” she said.
Because so little is known about the condition, the gathering at Rathmines provided an invaluable forum for the sharing of knowledge and ideas, and for bonding.
“The purpose of the four days was for us to connect and share our stories,” Ms Bobeth said.
“It is isolating. It is lonely [to care for a loved one with Cohen syndrome]. But this is an environment where no matter what we talk about, the person sitting across from us knows…
“We’ve learned from each other, and it’s wonderful to feel that we are being supported, and that we aren’t alone.”
Ms Bobeth said young people with Cohen syndrome often also had a range of medical issues that required medications and injections.
“Their health can turn in half an hour,” she said.
“And our children don’t complain. My daughter has never said ‘Mum, my head hurts’. They don’t verbalise in that way. They have a very high pain threshold.”
Ms Bobeth said the Catalina Lakefront Retreat had proved the perfect venue for their gathering.
“It’s been fantastic, and really perfect for us,” she said. “We have people with special needs, but here we can be together or we can go to our rooms and chill out.”
