Evelyne Blencowe, who suffers from Beals Syndrome, a congenital connective tissue disorder, has started kindergarten at West Bathurst Public School.

The five-year-old’s mother Louise said the rare disorder affects Evelyne’s joints and means she has to wear a back brace.

“It affects all her joints and the connective tissue, in particular in her spine,” she said. 

“She has severely worsening scoliosis [lateral curvature of the spine].

“She wears a spinal brace all day and night, to give her some support and try and stop her scoliosis from worsening.”

Mrs Blencowe said Evelyne’s severe scoliosis could also affect her heart, lungs and other organs. 

She said the syndrome meant Evelyne’s joints were quite loose and she was more prone to injury and dislocating body parts.

But Mrs Blencowe said Evelyne never let the syndrome hold her back.

“She is determined and confident. She tries to do everything all the other kids are doing,” she said.

“I think she will absolutely love school.”

When the Western Advocate spoke to young Evelyne, she could not wait to get back to class.

“I’m sometimes a little bored, but most of the time it is really, really good,” she laughed.

“I really like drawing and all the reading.

“And I like my teacher, Mr Denmead. He’s nice and funny. I like his jokes. I’ve got lots of jokes I’ll have to tell him.”

Mrs Blencowe said the staff at West Bathurst Public School had been very helpful and had organised a part-time aide for Evelyne and set up equipment to assist her.

“The part-time aide will mainly be for supervision in the playground,” she said. 

“They have also installed a special toilet frame to give her independence.

“She also has a special pram, as she gets hot and tired very easily and her lungs aren’t great, so she cannot walk long distances.”

Mrs Blencowe said Evelyne had to wear a full plaster cast around her torso during the winter, which further reduced her mobility.

“It is more supportive than the brace, but it comes off in summer to give her a break in the heat.”

Mrs Blencowe, who is an occupational therapist, admitted that it was difficult to watch her daughter battling a syndrome that was so rare.

“I’ve had to do a lot of research on it myself and when I go to all her appointments I often have to fill the doctors in on her condition.

“I’ve looked into it a good deal and I only know of five families across Australia that are dealing with this.”

Because of this lack of information, Mrs Blencowe started a blog, Living With Beals, which explores the rare genetic disorder.