Raymond Terrace hosts Cohen Syndrome support meeting

Cohen syndrome is an autosomal recessive disorder that causes intellectual, physical and visual impairment. 

“There’s maybe 15 cases in Australia,” Raymond Terrace mum Linda Bobeth said.

“We had a really good turn out. We even had a the mother of what’s believed to be the first case in Singapore.”

The parents gathered for lunch at the Red Eye Cafe.

From there they went to Raymond Terrace Bowling Club to hear from experts in the field of genetic disorders.

Ms Bobeth is mum to Amy, 32, who was in centre care last year until Disability Services Australia closed its Raymond Terrace program.

Amy is amid a NDIS plan review. The hope is she will receive one-on-one care soon.

“It can be lonely as a parent of a child with Cohen’s,” Ms Bobeth said.

“There was even less known about the syndrome when Amy was born.

“It’s empowering to be able to share stories with other parents.”