Fourteen year old Ben’s dearest wish was to spend a fantastical holiday with his family on a trip to Disneyworld Florida.
Ben, who lives in South Yorkshire, has cystic fibrosis. He was diagnosed at six weeks old with the life-shortening disease that he shares with his little sister, Ella. The condition affects all of the major organs and particularly the lungs, meaning that for Ben and Ella life is a continual battle against the disease, fought with medication and physiotherapy.
Ben’s mother Karen said: “On the outside, Ben is like any other teenage boy, but the damage is all on the inside. We knew in our hearts when he was born that something was very wrong. Although he was feeding, he simply wasn’t putting on any weight. He was then diagnosed at six weeks with cystic fibrosis.”
“January 2010 was a real low point for us. Ben was having a routine test on his lungs in hospital and he simply couldn’t breathe. He was kept in and had a terrible pain in his stomach. We really didn’t know which way it was going to go.”
When Ben was referred to Starlight for a once-in-a-lifetime wish, he told us: “My dream in life is to spend time with my four year old sister Ella, who has cystic fibrosis too, and my one year old brother Jack, who does not have cystic fibrosis. I would love to go to Disneyworld Florida to share a great experience with my family as we have never had a proper family holiday together.” [continues below]
Mum Karen added: “Ben is a very outgoing lad – he enjoys football, fishing and being with his friends and his aim in life is to live it to the full for as long as he can. To fulfil his wish to go to Disneyworld Florida would mean so much to us as a family because day to day it can be very hard. Ben and his sister Ella spend a lot of time in hospital having treatment and so it would be very special to spend time together and forget about everything else for a while. It really touched us that Ben chose a wish for us to share as a family and one that would make his little sister and brother so happy.”
Determined to create the holiday of a lifetime for Ben and his family, Starlight organised a VIP trip to Disneyworld Florida, where they were treated to a very special tour of all the excitements of the theme park, including the rides, the parade and, of course meetings with their favourite Disney characters.
Mickey and Minnie Mouse, Ella’s favourite characters, joined the family for a surprise lunch outside Cinderella’s Castle and presented the family with special tickets to the performance of Fantasia, which proved a wonderful finale to the family’s magical trip.
Karen said of the trip: “We would never have dreamed of being able to do something like this for Ben, Ella and Jack. We really can’t thank Starlight enough – it’s absolutely fantastic. I don’t think I have ever seen the kids as happy together as they have been in Disneyworld.”
Ben’s dad, Peter, said: “We were told that Ben and Ella might not live beyond the age of 13. Ben is now 14 and every day really is precious. Ben‘s health can change really quickly and one day he may be at school and the next he can be really poorly. We have to take each day as it comes and that’s how important this holiday was to us.”
For Ben, it was “something that we can all keep in our heads and never forget and I’d really like to thank Starlight for that opportunity.”
Ben and Ella are both doing well and are enjoying life and spending time with their friends.