• Increase text size
  • Decrease text size
  • Print this page
Home » Individuals and Families » Heather's Story

Heather's Story

Fairfield mum extends support to parents of children with undiagnosed conditions

From: Northcote Leader

October 08, 2014

 

708673-c 2139ca 0-49f 9-11e 4-b 1ed -07f 1d 49d 3c 78

Heather Renton with daughter Becky in their backyard. Picture: Richard Serong

 

HAVING a child with a serious illness or disability is overwhelming enough for a parent, but imagine if it was something so rare there was no diagnosis.

Fairfield resident Heather Renton's daughter Becky, 8, is among thousands of Australian children with an undiagnosed genetic disorder.

"No one chooses to have a child with a disability but when you do, you play the best card you can." - Heather Renton

 

Becky's genetic disorder is undiagnosed.

Becky's genetic disorder is undiagnosed. Source: News Limited

 

Becky's condition has caused serious physical and intellectual disabilities but has no label to describe it or pattern for parents to follow.

"Becky was born with low muscle tone, vision-impaired and an intellectual disability, her left eye floats, she didn't walk until she was three or talk until she was four," Ms Renton said.

"She had numerous doctors' visits, countless tests and was misdiagnosed twice - welcome to the world of undiagnosed disorders."

Ms Renton said when she went to look for a support group to connect with others experiencing a similar isolating journey she discovered there was nothing in Australia.

But she found there was a group called Syndrome Without A Name in the UK, so she decided to start a local group.

 

"Becky was born with low muscle tone, vision-impaired and an intellectual disability, her left eye floats, she didn't walk until she was three or talk until she was four," Heather Renton.

 

Two years after starting SWAN Australia, the not-for-profit group has 70 members but it runs on the smell of an oily rag and needs more funding to continue offering opportunities for members to connect and give each other emotional support and share information.

Ms Renton has applied for a Leader Local Grant so SWAN can buy a laptop computer and printer to communicate with members about events and encourage social inclusion.

"We provide an avenue for parents to discuss coping strategies with each other and aim to decrease feelings of segregation," she said.

SWAN also aimed to raise awareness about the poor level of funding for genetic research and testing, which caused delays in test results.

Ms Renton said although Becky's behaviour was sometimes challenging, she loved her to bits.

"No one chooses to have a child with a disability but when you do, you play the best card you can," she said.

Ms Renton said Becky brought out the best in her big brother Dominic, 11, teaching him to be kind, caring and accepting.

 



Healthcare Directories

Virtual Communities

Webinars & Podcasts

Support Groups

Klinefelter Support

Neuromuscular Support

NF Support