THE mum of a little girl born with a genetic disorder is urging other parents in a similar situation not to give up hope.

Nurse Aisling Roberts’ daughter Darra defied the doctors’ odds to mark her second birthday and she is still fighting strong.

The call comes as the family marked Trisome 18 Awareness Day on Saturday.

Families across the country are seeking to raise awareness of genetic disorders throughout the month of March and spread the message that there is support out there – even when it seems that all hope is lost.

Darra was born with the odds stacked against her after being diagnosed with both the genetic condition trisome 18 – also known as Edwards’ syndrome - and a hole in her heart.

The condition sees youngsters develop an extra copy of a chromosome in some or all of the cells in their body.

This disrupts the foetus’s development and can even lead to a miscarriage. Just one in 12 youngsters born with Edwards’ syndrome make it to their first birthday.

But last October the toddler celebrated her second birthday, defying all predictions and leaving the family in uncharted territory after being told to prepare for the worst.

The Roberts were told that Darra had been born with ‘full’ Edwards’ Syndrome, but it has since transpired – through further testing - that the toddler has mosaic Edwards, which means that not all of her cells are affected by the condition.

“She has the extra chromosome in some of her cells, but we will never know which ones they are as there is no way of testing every single cell,” explained Aisling.

“We know that her heart has been affected by it because of the hole, but apart from that so far so good – she is developing well and should have a happy, normal life. You would never think anything was wrong with her.”

Currently, expectant mothers are tested at 16 weeks for genetic conditions, and Aisling said she feared that some mothers may make rash decisions based on the results, when many youngsters born with conditions such as Edwards and Down’s syndrome went on to lead very happy lives.

“I do worry about it, because it does put the fear of God if in you,” Aisling said.

“You wouldn’t choose it for anyone. It’s like going in to a shop and choosing to buy broken biscuits, you just wouldn’t do it.

“Everybody wants a healthy child. Back in the 1980s people were told if they knew their baby would be disabled then they should stick it in a home, or not have it at all.

“But nowadays people can and do live with disabilities and lead very happy lives.”

Far from fearing the worst, Darra’s condition has led Aisling to meet other families living with the condition, and they have discovered other youngsters who are living beyond what was predicted for them.

She has found great support from the charity SOFT UK – the Support Organisation For Trisomy 13/18 – upon learning of Darra’s condition.

“They had someone ring me straight away, and even though they were a bereaved family they were able to talk to me,” she said.

“If anyone finds themselves in our situation I would urge them not to make rash decisions, and look for resources and information on the condition – you would be amazed at what’s out there.

“It is not always as bad as it seems.”

For more information visit www.soft.org.uk