George, who's living with Batten disease, a form of childhood dementia, wishes to go tobogganing in Austria.
Four-year-old George lives in Warwickshire with his mum. He is living with Batten disease and wishes to go tobogganing in Austria.
George is a mini-thrill-seeker and successful campaigner, having ridden in helicopters and starred in posters in Westminster calling on ministers for greater awareness of his condition.
He loves school, getting muddy outdoors, and getting into mischief. But he is also living with a rare and fatal form of childhood dementia called Batten disease.
Since his diagnosis a year ago, the disease has stolen George’s speech, his ability to walk and to eat on his own. Mum, Claire, says George is incredibly brave and happy, despite everything he is going through.
Amazing and heart-breaking at the same time
“To say it’s devastated our family is an understatement. I still haven’t found the words to describe how it feels. He is such a brave boy and you can still see the determination in his face, he wants to try everything. Even though his body is failing him, his mind is still driving him.
"It’s amazing and heart-breaking at the same time. Because Batten is a rare condition, it’s very difficult for doctors to give us a timeline. George is not going to get better, but we take everything day-by-day.
“I do everything for him – sort his feeding tube, put him in his wheelchair, give him his medication. Of course my working life has had to change because he needs so much care, and I constantly have the prospect of the future in my head. It’s changed our mindset and given us a focus.
"When you don’t have something like this, you think, ‘oh I’ll get to that later,’ but I don’t wait for anything anymore. We pack in as much as we can. George is teaching me such a lot; patience, determination, and to seek out happiness despite everything.”
Something completely wild
“We’d been so focussed on his medical care, those nice things you do as a family didn’t even get a look-in. Then, George’s doctor suggested we talk to Make-A-Wish. He hasn’t had speech for a year now, so it’s important to me that I help him express his emotions. He is an adrenalin-junkie by nature and I want to gather as many memories with him as possible in our limited time together.
"When the wish visitors came to see us at home, we wanted to choose a wish that would encapsulate things George loves – he loves sledging and rollercoasters, so we chose something completely wild, to go tobogganing in the snowy mountains of Austria!
"I didn’t honestly think you’d be able to grant the wish, but we were so excited when our Wishgranter Amy said yes! She’s been amazing – always there to give advice, it’s as if she has been waving a little wand over our family.”
The world at your feet
In Austria, as well as tobogganing, George will visit a Birds of Prey exhibition, and he’ll able to swim too, which he loves to do.
“For us, this wish will give us the most incredible memories with George, and a chance to replace the pain and heartbreak with laughter and joy. As a parent, seeing your child’s reaction to something they could only wish for is an everlasting memory which you could never put a price on. For George, or any child, it’s like having the world at your feet.”