WHEN Darra Roberts was four-months-old, doctors told her parents the baby would not make it to her first birthday.

Paediatricians had identified a hole in the Old Town girl’s heart and Darra was diagnosed with rare genetic condition Trisomy 18, also known as Edwards’ syndrome.

The condition sees youngsters develop an extra copy of a chromosome in some or all of the cells in their body. Many babies with the condition die in early childhood and those who do survive can have severe disabilities.

Darra’s mum, Aisling, refused to accept the diagnosis, urging doctors to run more tests.

There followed a terrifying period of around six weeks, during which time Aisling said she was “walking around like the dead” with worry for her youngest child. “I was just functioning, questioning everything and trying to make things as normal as possible for our other children. I was up until three o’clock in the morning talking to other parents online.” Happily for the Old Town family, rather than “full Edwards” Darra was diagnosed with mosaic Edwards - meaning not all her cells are affected by the condition.

Four years later, little Darra is a happy, healthy little girl, fond of singing the tunes from her favourite film, The Greatest Showman.“She rules the roost,” Aisling said. “She’s happy. She gets what she wants and she could charm the last pound out of your pocket.”

Darra is part of a global scientific study tracking people with the syndrome and earlier this year she travelled to Westminster, meeting MPs and peers campaigning for support for people with rare diseases. Darra was photographed alongside Conservative peer Baroness Blackwood, who suffers from a rare genetic condition a symptom of which is chronic migraines.

Speaking during Trisomy Awareness Month, mum Aisling, 43, urged those whose children had been given an Edwards diagnosis not to give up hope.

“A lot of people will be pressurised into having a termination,” she said.

“The key is just to be as informed as you can be - and don’t take a diagnosis as said. Ask all the questions and don’t be scared to constantly question the professionals, because they don’t know everything.”

As a baby, Darra spent four hours on the operating theatre table, as surgeons fixed a hole in her heart. It is possible she will need further surgery in the future

“It felt like the longest four hours of my life,” said Aisling.

Far from despairing, the hospital nurse and her family found support from communities online, including Facebook groups set up specifically to support parents of children diagnosed with Trisomy 18.

Through the support groups, Aisling and husband Nick have made lifelong friends and attend an annual family fun day.

And Darra knows she’s different, says Aisling. “She knows she’s special - and her siblings know she’s special.

“As a family, we don’t put anything off. We’ve always been a go anywhere, do anything family. But we’re out enjoying life. Darra’s diagnosis made me more aware you can’t put anything off.”

With a nurse for a mother, Darra is perhaps in a privileged position. Others are less lucky. The relative rarity of Edwards syndrome means not all clinicians understand the condition, with experienced geneticists based at larger university hospitals like Oxford and Southampton rather than district hospitals such as Swindon’s Great Western Hospital. Darra has not seen a health visitor, a specialist nurse or midwife whose services are commissioned by the council, for two years. Nationally, in late 2017 health visitor numbers in the NHS were at their lowest since 2013, according to think tank the King’s Fund.

For more about Edwards, visit: www.nhs.uk/conditions/edwards-syndrome.