When Isla Hufton’s parents were told she was terminally ill, they arranged a special trip to Disneyland Paris, so the 14-month-old and her three-year-old sister could enjoy being treated like fairy tale princesses and make happy memories to treasure forever.
Stephanie and Josh Hufton from Lichfield were able to keep Isla comfortable throughout the holiday of a lifetime thanks to the loan of a special buggy and a Comfort Capsule, which is designed to support the whole family and help them create and record precious moments, both of which were provided by Newlife Foundation for Disabled Children, the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Isla was born with a condition called Mitochondrial DNA Depletion Syndrome, but the couple only began to realise something was wrong when she was three weeks old and began having difficulty feeding and experienced some breathing problems. When they took her to hospital they were told she had a floppy larynx, but a high calorie diet didn’t stop Isla being underweight and she then stopped being able to suck, so a feeding tube from her nose was fitted.
The skills Isla had developed then began to deteriorate, leaving her unable to sit or support he head properly and she developed frequent chest infections. Then, during an operation to insert a feeding tube into her stomach and take a muscle biopsy, it was discovered her liver was inflamed and scarred, leading doctors to diagnose the genetic condition which affects her blood and causes organ failure.
Stephanie said: “She now has borderline liver failure and her breathing is irregular and getting worse each day. We don’t know how long she has – days, weeks, or months – but we have been told she won’t celebrate her second birthday in February.”
Determined to create happy memories in the time they have with Isla, the couple contacted Newlife Foundation to explain the situation and received the equipment they needed within a few days, so they could take Isla and big sister Lily-Grace away on the trip which mum Stephanie says ‘couldn’t have been any better’.
The buggy gives Isla all the postural support she needs to keep her safe and comfy as well as the extra space they need to carry her vital medical equipment. It will continue to be used at home so the family can easily take Isla out when they need to.
Stephanie said: “Having the buggy at Disneyland Paris was incredible. We could lie her back to keep her comfy when she sleeps and sit her up to see what’s happening. We even managed to get the buggy onto a few rides.
“Whenever we went out for a meal or a coffee the buggy just slotted under the table so Isla could really be a part of everything, she could sit up and smile and not be left out. It meant she wasn’t in her car seat all the time so we weren’t worrying she was uncomfortable.”
While the buggy made the practicalities of the trip easier, the contents of the Comfort Capsule helped create memories the family will always treasure. Each is filled with a wide range of carefully chosen items including supportive V-pillows and soft blankets to keep parent and child snug comfy, while a memory box, camera and digital photograph frame can capture and preserve moments in time.
Stephanie said: “We were able to take lots of photographs with the camera and at night we would snuggle Isla in the blanket so she was nice and cosy. We also took the photo frame recorder out with us and we have a recording of Isla giggling and saying mama.
“A highlight of the trip was when Isla and Lily-Grace had tea with the Disney Princesses, especially as Isla couldn’t stop staring and she screamed when she saw Cinderella’s mice – it was lovely to see her reaction. The whole thing was very tiring but so rewarding to see them enjoy themselves there – it was the chance of a lifetime. We’ll be able to treasure those memories forever.
“Now we are home we are trying to enjoy every moment and we are still using the contents of the Comfort Capsule. The memory box is being filled, there is aromatherapy and music in Isla’s bedroom and she and Lily-Grace snuggle up under the blanket together to watch DVD’s on the player that came with it. The girls also take turns with the teddy scented with calming lavender.”
Stephanie added: “Without Newlife we wouldn’t have been able to have these experiences. It would have taken months to get a wheelchair through statutory services, so having the buggy within a matter of days so we could do this was priceless. There is also support over the phone with nurses available just to listen – it’s incredible.”
Requests for Comfort Capsules can be made by a healthcare professional on behalf of the family to the Newlife Nurses on 0800 902 0095 (free from a UK landline and mobiles).
Pictured: Isla Hufton