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George smiling on his wish
George
Batten disease
I wish to go tobogganing in Austria

Four-year-old George lives in Warwickshire with his mum. He is diagnosed with Batten disease, a rare and fatal form of childhood dementia.

In June 2018, George’s wish to go tobogganning in Austria with his mum, uncle and grandparents was granted.

Mini-mischief-maker

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.

Since his diagnosis over a year ago, Batten 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, but George is not going to get better.

George in his wheelchair in his garden

Something completely wild

“We’d been so focussed on his medical care, fun family activities didn’t even get a look-in. Then, George’s doctor suggested we talk to Make-A-Wish. He is an adrenalin-junkie by nature and I wanted 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!

George sat in the cock pit of a plane with the pilot

"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 his feet

When they returned home, mum Claire told us all about the holiday:

“We had the most amazing trip, and I have a million memories from it. The tobogganing was way better than we could have imagined – the first route was 3.2km long, and it took a full 10 minutes to get down! The second toboggan was much steeper and faster, and the views through the forest and down the mountain on both were incredible. George loved it!

"I recorded a video as we were hurtling down the mountain and I asked George, “Are you having fun?” and he replied, “Yes!”

"For the first time in over a year my son spoke, and I was delighted. I think it was a result of all of his senses firing at once from the excitement. It was such a magical moment that I will never forget, and the wish brought that out of him.

“We rode in a cable car, saw a spectacular birds of prey show in a beautiful valley, and watched planes fly into the airport from the observation deck. The place where we stayed in Austria was so close to the border with Germany and Italy that we were able to take day trips to both countries. We went to the Chitty Chitty Bang Bang castle in Germany and in Italy we ate pasta and Italian gelato. I haven’t seen George enjoy food orally like that in such a long time – we ate a lot of ice cream during the holiday!

George and his grandma smiling at each other

“The achievement of doing this sort of trip with George is really important to me – we visited three countries in a week and packed in so much adventure and excitement, and to have my parents and brother sharing the experience made it all the more special. It gives me such joy to see George so happy.

"Before his wish, I said that I hoped the trip would make George feel like he had the world at his feet, and there was a moment we captured on film during the tobogganing where you can see his little feet in the foreground, and in the background is this breath-taking view so, yes, his wish delivered on that - he literally had the world at his feet!

George on the toboggan with the wind in his hair

“I already know George’s wish is having a positive impact on him, because every time I talk to him or someone else about it, or show them the footage, he lights up like he remembers it. It is amazing to me that he has retained those memories. It’s lifted us both and helped me, as a mum to a seriously ill child, to get through another chunk of time, another set of appointments and medication and worry.

"Make-A-Wish gives poorly children a moment of escapism from the pain, sadness and challenges that they deal with every day, and that is priceless.

A selfie of George and his mum

"A child’s wish can seem like the smallest thing but it means so much and really has a huge impact on not only the child but the family too, because a child’s condition deeply affects everyone involved and seeing that child happy again means everything. George’s wish has given our family so many priceless happy memories to share, and they’ll last us forever.

"George turned five last week and we went indoor skydiving to celebrate – and we have many more adventures to go on together yet. Thank you so much to everyone who supported George’s wish.

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Accommodation & flights £4,200; Meals £435; Transport £200; Insurance £110; Spending money £50; Wish pack items £10; Total £5,005

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