A TEENAGER living with a rare condition that affects around one in 100,000 children in the UK has been granted her wish to visit Disney World in Florida.
Stevie Taylor, 15, from Wath is living with Batten disease, a rare genetic neurological condition.
Batten disease causes fatty substances to build up inside brain cells, gradually damaging the brain and nervous system.
It is a life-limiting condition that requires ongoing medical care and support.
Most sufferers do not live beyond their teens or early 20s.
Like other children living with the condition, Stevie has suffered vision loss, seizures, difficulties with movement and the progressive loss of previously learned skills.
But despite that, Stevie lights up the room with her personality.
She has always been a big fan of Disney films and characters and her greatest wish was to visit Walt Disney World Resort and experience the magic she had seen in her favourite movies.
Alongside Stevie, her ten-year-old sister, Jasmine, and her parents, Karen and Paul, were guests on a special all-inclusive ten-day trip to relaunch When You Wish Upon a Star’s Disney Wishes programme.
Their wish included three VIP days at Walt Disney World Resort, with priority ride access using the Wish Pass, character meet-and-greets with Disney princesses, and accessible viewing areas for parades and fireworks.
They also enjoyed two days at Universal Orlando Resort, where the family was able to bypass long queues and enjoy attractions at a pace that suited Stevie’s needs.
The family stayed at Give Kids The World Village, a resort designed for children with critical illnesses that offers full support for their needs and even has its own accessible rides and playgrounds.
Paul said: “Stevie absolutely loved the themed areas, accessible rides and the famous ice-cream parlour within the village.
“For us, the whole experience was amazing as it allowed Stevie to enjoy the magic of Disney in an environment designed around her needs.
“The trip provided a rare opportunity to step away from normal life, with all the routines of medical appointments, and focus on creating joyful memories as a family.”
Karen said that Stevie meeting actresses and charity ambassadors Ellie Leach and Brooke Vincent was a real highlight.
She added: “Brooke and Ellie didn’t just show up for the trip, they truly invested their time and hearts in getting to know us all.
“Spending time together in Florida, whether it was shopping, chatting or just laughing as a group, created memories we’ll treasure forever.
“What’s meant the most is that Ellie has stayed in touch with us since we returned home.
“That continued connection has made the whole experience even more meaningful.
“It wasn’t just a trip, it was the beginning of something truly special for our family, and we will always be grateful.
“We were also really touched by the personalised experiences organised for Stevie with Disney cast members.
“She was so happy to be given her own meet-and-greets with her favourite characters.”
