Those of you who follow my blog will know that I support Make-A-Wish, an amazing charity which grants life-changing wishes to seriously ill children.
The other day, something that made me sit up an pay attention popped into my inbox from them – a story about a child who had childhood dementia.
Yes let me say that again.
I was floored.
If you have never heard of childhood dementia you are not alone because I had absolutely no idea there was such a thing as childhood dementia and it made me want to cry.
Dementia is something that we associate with ageing, so imagine how cruel it must be to have a child who has not even lived by our adult standards to then be experiencing it as a mere little.
My heart wanted to break there and then.
Imagine being a parent of a child with childhood dementia, being robbed of so many joys of everyday life with their children that so many of us take for granted – including myself. Imagine witnessing your child’s rapid decline as dementia takes hold of and plagues their little brain.
So that’s why I wanted to dedicate this post to four-year-old George. George lives in Warwickshire with his mum. He lives with Batten disease, a form of childhood dementia.
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.
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 essentially fatal form of childhood dementia – Batten disease.
On living with this harsh reality, his mum shares:
“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.”
Make-A-Wish is currently fundraising for George’s one true wish – something that encapsulates everything George loves – something totally wild given that he loves sledging and roller coaster!
To go tobogganing in the snowy mountains of Austria!
Together we can help to make his childhood wish come true