Health: Brave Ella’s dream becomes a reality
FOR teenager Ella Spilsbury, a visit to Florida this autumn really was the trip of a lifetime as her complex care needs mean her family could never have taken her on holiday without help.
In fact the family – Ella, mum Sarah Swingler and sister Nicole Swingler – were treated to a Destination Dreams holiday with a packed schedule of days out from Caudwell Children, the charity set up by Staffordshire millionaire businessman John Caudwell.
Ella came face to face with Disney princesses, hit the heights on fairground rides, met Winnie the Pooh and Tigger and saw the Universal Studios.
It was a trip her mum could never have imagined the family taking as both of her children have physical disabilities.
Fourteen-year-old Ella was born with a rare chromosome disorder, Lennox-Gausaut Syndrome, which causes severe epilepsy, so severe that at one point Ella was suffering hundreds of seizures.
“When she was little she would have about 700 seizures a day,” recalls her mum, a 45-year-old physiotherapy assistant. Ella’s condition vastly improved having been put on a ketogenic, or high fat, diet for the past seven years which has reduced the fitting to around two or three times a week.
But her condition is complicated by the fact she also has unrelated tracheobronchial malacia meaning her windpipe is floppy just above the lungs and is liable to collapse, preventing her breathing. A tracheostomy helps with this condition but it means that oxygen must always be on hand. With Ella’s need for continual care, the family had never dared to travel long distance.
“I wouldn’t have felt able to take her on a plane,” says Sarah, of Castle Vale. “I was apprehensive about that bit because we had never done anything like that before but everything was so well organised and it was organised with the needs of the children in mind.
“Just things like getting all of those wheelchairs on board and then making sure they weren’t damaged and went back to the right families. It may sound something simple but when a child uses their wheelchair all the time it is essential.
“It was also a real help that we were able to take her nurse from Complex Care, Rachel McCarthy, who usually looks after her, with us. And there were plenty of medical staff and volunteers with the group so I knew there would be people there to help.
“It was knowing there would be trained medical staff there which made all the difference.
“Ella loved all of it. We went to Animal Kingdom, Disney’s Magic Kingdom where she did the rides and she saw shows like The Lion King and Beauty and the Beast. Her favourite bits were going on the rides and meeting Cinderella.
“Ella could never have gone on rides like these in England as they just don’t make their facilities available for children like her. It meant she was able to do things she had never done before. It is such a shame that she doesn’t get these kind of opportunities here. It really was the trip of a lifetime.
“And what was so good was that so many of the activities were aimed at children like Ella. So, for example, many of the shows were multi-sensory. They would be spraying water at the audience or blowing bubbles.”
The trip had been planned for months but looked like it may have to be cancelled at the last minute when Ella, a pupil at Victoria School in Northfield, fell ill a fortnight before leaving.
“She got a chest infection and had to go to Birmingham Children’s Hospital and we were concerned about her going on the plane,” says Sarah. “She did need oxygen both ways but she was fine. We really didn’t want to have to cancel it so late.”
Also on the trip was Ella’s sister Nicole, aged 20, who is blind after suffering an inflammation of the eyes four years ago.
The plucky youngster learned braille and took her A-levels so that she is now studying for a BSc in Applied Psychology at Plymouth University.
And was thrilled at the idea of going to Florida.
“It was such a great trip,” Nicole says. “Ella loved it, she was smiling all the way round. It was all really good but my favourite bit was seeing the dolphins. We were invited down to feed them and that was something I had always wanted to do.”
And for their mum it was wonderful to see both of the girls experiencing so many exciting new places.
“I would never have been able to afford something like this for all of us,” she says. “And it is the practical difficulties. I can push a wheelchair and guide Nicola but it is easier if there is someone else there to help us. It just takes away any of the stress you would have trying to organise it.
“The furthest we have been before was a camping holiday in France. But we drove there which meant that at any point, if it became a problem, we could just turn round and come back again. Here we had the support to know that we wouldn’t need to do that.”
The family were part of a group of 25 youngsters and their families invited on the trip by Caudwell Children. The group stayed at the Give Kids the World resort which has been designed specifically for children with a high medical dependency.
Caudwell Children’s chief executive officer Trudi Beswick says: “Destination Dreams is often a lifeline for these families. It takes them away from constant medical appointments and the stress the families and youngsters are often experiencing.”
