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'Very distressing': NSW parents of disabled boys sue over incorrect genetic test result

The parents of two young boys have appeared in court, suing a Sydney fertility clinic over incorrect genetic testing.

Mother of two Leighee Eastbury visited the clinic to test for a hereditary genetic condition and was told she didn't have it but the diagnosis was incorrect.

Both her sons with and husband Philip are disabled and the family are now seeking compensation to help raise them.

The couple's children are both disabled. Source: 7 News
The couple's children are both disabled. Source: 7 News
Mr and Mrs Eastbury sued the clinic. Source: 7 News
Mr and Mrs Eastbury sued the clinic. Source: 7 News

While there's no disputing the pair love their two boys, life for them can be testing.

"We love our boys - we know that we missed out on a lot of things that a typical family would," Mr Eastbury said.

But it could have been much different, had Leighee been properly diagnosed almost two decades ago.

"It's been very distressing," Mrs Eastbury said.

"I suppose the last couple of years since we had the boys diagnosed has been mentally draining."

Their sons Hayden and Jake are both under the age of 10 and both have intellectual disabilities.

That's because Mrs Eastbury is a carrier of the Fragile X syndrome, something her uncle has, and something she was tested for when she was 20.

PICTURED: The family. Source: 7 News
PICTURED: The family. Source: 7 News

She got a referral from her GP and Genea, formally known as Sydney IVF, did the screening.

It came back negative, but it was the wrong test.

Mrs Eastbury has Fragile X syndrome. Source: 7 News
Mrs Eastbury has Fragile X syndrome. Source: 7 News
The clinic settled with the couple for an undisclosed amount. Source: 7 News
The clinic settled with the couple for an undisclosed amount. Source: 7 News

Ms Eastbury said if she knew she had this chromosome she "probably" wouldn't have had children.

The couple had further testing done, when Hayden started missing development milestones.

Their suspicions were confirmed.

"I was devastated, absolutely devastated," Mrs Eastbury said.

The couple say some days can be draining. Source: 7 News
The couple say some days can be draining. Source: 7 News

The Eastburys aren't just suing for negligence, but for the emotional and mental toll they've been through as well.

It's likely the boys will need care for the rest of the lives.

Late on Monday, Genea settled with the couple for an undisclosed amount.