THIS year, Ella and Chloe Barden went on what would be the trip of a lifetime for most youngsters.

The two girls joined parents Jodie and Luke and brother Alex on a flight to Disney World in Florida to meet their Disney Princess Heroes and spend a week enjoying the resort.

But beneath the joy and delight is the prospect the family lives with every day that neither Ella, who turns ten in January, or Chloe, three, will live past the age of 12.

They both have the genetic condition Cockayne Syndrome, which causes premature ageing.

The trip was organised by Caudwell Children, which helps children with life-limiting illnesses. Jodie, 30, of Witham, said: “I didn’t think we would be successful when we applied but I thought it was a case of just seeing what happened.

“Ella has had a really good year, no visits to the hospital and no major illnesses, and I thought this would be a time she could go and would get the best out of it and be able to really appreciate it.”

Jodie was 26 weeks pregnant with Chloe when they finally got the diagnosis Ella had the condition.

Ella was almost six and the family had gone through a lengthy process to get to the bottom of her development issues.

Jodie explains: “We noticed she wasn’t reaching the milestone she should have been at about eight months I think. Because she was our first child, it took a bit longer to realise but then we quickly noticed she was not doing things her friends were doing.

“She rolled over but did not climb over furniture or pull herself up and that was concerning.

“And she didn’t start to talk and babble like she should have done so that was when the health visitor said ‘right we need to look into this a bit more’.”

Having been referred to Moulsham Grange Children’s Centre, in Chelmsford, and then to a paediatrician, Ella underwent tests and checks from blood samples being taken, to MRI scans.

They were told Chloe had a one in four chance of developing the syndrome, as both parents carried the relevant gene.

Having undergone an extremely painful procedure where a needle is used to take a sample of amniotic fluid surrounding the unborn baby, doctors discovered Chloe would also be born with it.

Jodie said: “As you can imagine it was awful. We had already accepted that something was wrong with Ella, but with Chloe it caught me completely off-guard.

“We were just a few weeks away from Christmas, but we just had to get on with it for the children and they would never have known anything was wrong.”

She says it completely changed the entire family.

“We live every day to the full and we make sure we spend as much time with family as possible.

“At Christmas and birthdays we tell people not to buy presents, just come and spend time with us, take the children out for the day or we will all go out and do something,”

says Jodie.

Ella, a pupil at Southview School in Witham, is gradually losing her sight and has never walked. But she is able to stay mobile, as is Chloe, with the use of a walking frame. Her huge determination stood her in good stead earlier this year when she joined her family in a walk to the top of Mount Snowden in Wales.

The family supports Amy and Friends, a charity set up by a woman whose daughter also had Cockayne Syndrome and Jodie has taken part in Maldon Mud Race and Tough Mudders to raise funds.

With Ella now almost ten, the reality of her condition is not far a w a y.

“She has had a really good year, with no major visits to the hospital, so that is very positive but of course, although I try not to think about it, it is there. I am usually fine day to day, because I am keeping busy and have lots to do, but at night it is hard sometimes, and then the tears will flow.

“I can’t watch things like Children in Need or programmes where children are poorly, it is just too close to home. It opens the floodgates and the full extent and unfairness of the fact I am going to lose my children hits me.

“But both me and my husband, Luke, are generally very positive people and we support each other through it,” she says.

She says five-year-old Alex, who is a carrier of the Cockayne Syndrome gene but does not have the condition, knows something is different about his sisters.

“He is wonderful with them and they have a lovely relationship.

“I never ask him to help but he just naturally wants to do what he can, so without even asking he will pick up something they have dropped or move something out of their way so they can get through with their walkers. He is only five, so I don’t think he understands the full extent of the situation, but I always try and answer him as honestly as I can and I don’t keep anything from him.”

For now the focus is on keeping both little girls well and enjoying time spent together as family.

Visit justgiving.com/ellasbutterfly.