Edie, my seven-year-old niece is a beautiful, kind-hearted, and smiley little girl.
She loves performing – particularly singing and dancing – school, and running really, really fast. She’s also bright, funny and has a sense of humour that’s cheeky beyond her years.
But all of that changed when, in November last year, we got the news that she has an incurable brain tumour called diffuse intrinsic pontine glioma (DIPG).
It’s the deadliest form of childhood cancer and has an average survival rate of just nine months after diagnosis.
This rare cancer typically targets children between five to seven years old and slowly strips them of the ability to do all the things they enjoy. Less than 1% of those diagnosed live longer than five years and, tragically, it’s terminal.
My family are doing everything in our power to seek alternative treatment, but we need the funds to do so, so I’ve written a book to help raise money.
After Edie’s diagnosis, at first we felt confused, alone and utterly hopeless, but there was no way we were giving up without a fight.
Since her diagnosis, Edie’s suffered more than any little girl ever should. She can’t do many of the things she wants to and has to take tablets every day, which she hates.
Edie endures regular hospital visits and tests, and recently underwent her second intense course of radiotherapy following the news in August that her tumour had grown. It was a crushing blow.
Treatment beyond radiotherapy – which essentially just eases her symptoms – is in the form of clinical trials and with none currently active in the UK, they need to be sought abroad and funded privately at a huge cost.
With the help of our amazing friends and community, we crowdfunded to pay for private treatment in New York. This specialised treatment saw chemotherapy delivered directly into the tumour via a major brain operation.
But it’s not enough. DIPG is different and progression is inevitable, you just hope it won’t come quickly. We know these treatments are trials and offer no guarantees, but we could be the first and we live in hope of that for Edie.
I’d always wanted to write a book, but I never imagined it would be under such tragic circumstances. It felt like the perfect time to do something that would not only make Edie smile again, but raise money for her treatment at the same time.
And so I wrote a children’s picture book, called Grandad’s Lost His Glasses.
It’s a sweet story about helping each other and sees Edie, her brother Charlie and their loveable dog Coco go on a fun adventure together to find their grandad’s lost spectacles.
The idea for the book was inspired by the absentmindedness of my father-in-law – Edie’s grandad – David. I wanted to use it as a basis to create something special for Edie.
David is never happier than when he has all of his five grandkids on his lap listening to one of his famous ‘head stories’, which is what the kids call the tales that grandad makes up from his head. He has one for everything, and Edie especially likes the ones when he was younger and used to get into trouble.
My book also takes a really different approach to its illustrations. A team of 12 talented artists from all over the world donated their time to interpret each part of the story in their own unique way.
This book is for Edie because she inspires me every single day – and she was so excited when she heard I was writing a book with her in it. She hasn’t seen it yet because she wanted to keep it as a surprise but she can’t wait to read it and see all the different characters, especially Coco.
An illness like this comes with a sustained feeling of helplessness, so this book is also my way of guarding against that.
We will never give up in trying to extend Edie’s life. We’re currently looking for new treatments through various trials but it won’t be an easy road.
I’d love nothing more than for her to be able to wrestle with her brother or teach her baby cousin, Matilda, how to run fast like she could. Beyond that, we will keep fighting and treasure each and every day we have with Edie as a family.
Grandad’s Lost His Glasses is available now via Kickstarter until 2 November. Please pledge your support in return for a special children’s book, delivered in time for Christmas. All profits raised will be donated directly to Edie, to help towards her continued care and treatment.
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