Plea to send poorly youngster to Disney World
The parents of an 11-year-old girl from Runcorn, who has West syndrome, a severe form of epilepsy, and a number of other complex medical conditions, is appealing to their local community to support the charity that wants to treat her and the family to a dream holiday to Disney World, in Florida.
Paige Lilly Higham, was born with a number of conditions which have left her a permanent wheelchair user. She also has poor vision, has regular oxygen monitoring, and requires 24/7 daily care.
In 2016 Paige spent nine weeks in hospital and her life limiting condition has been extremely stressful for her and the family.
To get some much needed respite from her condition parents Daniel and Stacey, decided to apply for a place for Paige on Caudwell Children’s annual Destination Dreams holiday to Disney World, in Florida.
The charity created Destination Dreams in 2007, to give 25 children, with life threatening conditions the opportunity to experience a ‘Dream’ holiday to Disney World.
Stacey says that the family was delighted when Paige and the family were offered a place on the trip. However, due to a funding shortfall the race is now on to raise the necessary funds to cover the cost of the holiday.
As Stacey explained: “We were amazed when we found out that we were one of only 25 families that had been selected for the trip, we simply couldn’t believe it.
“The families are really well looked after as the charity provide a dedicated team of paediatric doctors and nurses who are available 24/7. They also take along over 40 volunteers to assist families around the theme parks.
“Because of the associated costs of taking very poorly children overseas the charity has to pay, on average, £12,000 per family.
“However, with the trip scheduled for February 2018 the charity recently informed us they’ve had to push it back to December 2018 as they hadn’t been able to raise the required £250,000.
“So the families on the trip have all decided to appeal to our local communities to help get us on that plane to Florida.”
The holiday is extremely important to the family as Daniel, explained: “Winter is very hard time for us, with Paige having recurrent respiratory problems she can be very vulnerable during this period.
“She can spend a lot of time unwell due to her chronic lung disease and low immune system. A normal cough and cold can lead to pneumonia, or a chest infection, and even more admissions to hospital for more support.
“Her life can sometimes be at risk so having the holiday put back a year it’s going to be a very nervous wait for us. We just hope she is strong enough each winter to make it to the next, and we hope she’ll be able to get to Florida for the once in a lifetime trip.”
Stacey says that it’s important to make memories as a family, as that’s all they may have one day. As she explained: “Paige adores Disney and girly things. It will be a dream come true to see Paige’s face light up when she meets all her idols, the princesses at Magic Kingdom.
“We can’t wait to experience Disney World as it’s something that we never thought we would ever be able to do together.
“To watch Paige enjoying it with her one-year-old sister, Poppy, will be magical! I just hope the public support our fundraising campaign.”
Trudi Beswick, Chief Executive from Caudwell Children, is urging the community to get behind the family’s appeal. She said: “For many families caring for children with terminal or life-threatening conditions the thought of leaving the protected environment of their own home town, and their medical support, fills them with dread.
“By providing 24 hour professional medical provision and a team of volunteers, for the duration of the trip, Destination Dreams gives families the chance to create happy memories, often for the first time!
“Unfortunately, the level of assistance that the families need doesn’t come cheap. That’s why it’s vital that Paige and the family get the fundraising support that they so desperately need and deserve.”
You can support Paige through her Just Giving page here.
You can also donate by texting PEAL58 – then the £amount – to 70070