My little boy Charlie died at Brian House, your local children’s hospice. But the special times we had there are now some of my most precious memories. I’d like to tell you about Charlie’s life – in the hope that it inspires you to help another local child this Christmas. I hope that’s OK.
Charlie’s life was full of superheroes. His bedroom walls were covered in posters of all the Marvel characters from the films – The Hulk was his favourite. Our friends and family members fundraised for him (we called them ‘Charlie’s Superheroes’!) so that he could go on adventures after his cancer treatment. And everyone at Brian House; they were all superheroes to him and me as we spent the last three weeks of Charlie’s life there.
Charlie was bright (I know, every mum says that!) and he loved reading, but these were books far beyond what I expected. He had read the whole Harry Potter series by the time he was seven, and then moved onto ‘teen fiction’, like The Maze Runner. I can also clearly remember sitting listening to him giving me his opinions on Romeo and Juliet! But the thing I remember most about Charlie was that he was funny. Really, really funny. Every day he’d have a new silly dance to show me – and an endless list of jokes he’d made up to make me laugh. And that’s how we were. Laughing together every day.
And then, just after Christmas 2015, when Charlie was 10, he fell over.
He was airlifted to Alder Hey Hospital and it was there, on the 26th January 2016, that they found the lump on his brain stem. For five weeks we lived on the ward while Charlie had chemotherapy and hoped and cried and hoped some more. He got through the treatment – but was still very ill.
That’s when a group of friends got together to fundraise for Charlie, raising the money to give him the chance to have adventures, go to the places he’d always wanted to go to (but I could never afford). So, 2016 became the year of Charlie’s adventures. A tour round The Making of Harry Potter in London came first (of course!) and then a few months later we went to Disneyland. Best of all (for me) we were able to take him to Lapland (Charlie died knowing Santa was real – because he’d met him).
Charlie continued to get worse, losing first his mobility, then his voice. In January 2017 I was told there was nothing more they could do. They could prolong his life for a while with more drugs – but they couldn’t save him.
That day I took the hardest decision of my life. I chose not to chase extra days by putting him through more painful treatments, but rather to give Charlie the best quality of whatever life he had left. I was caring for Charlie myself but as he worsened he needed 24-hour care and I just couldn’t cope; I had no sleep for three days at one point. I desperately needed help and Charlie needed constant, expert medical care. And that’s what we found when we came to Brian House.
Charlie and I spent just over three weeks at this wonderful, bright, colourful oasis of care and calm. They gave him the ‘Sea Room’ but decorated it with his posters from home (a 3-foot tall inflatable Iron Man came in too).
Andrew – a family friend – was Charlie’s ‘lead’ nurse and having him there was so reassuring for both of us. But all the staff were just incredible. They took over all his care needs – and that was the biggest thing they did for me. I had become his nurse over the past year – Brian House let me be Mum again. They gave me a ‘guest’ room upstairs so I could just be with him all day every day, holding his hands, stroking his hair, telling him stories.
Charlie died at Brian House in February 2017 and I was lying on the bed beside him. No child should ever die, but I can say with complete certainty that Brian House was the right place for Charlie to be. After he died, the nurses gave him a bath and dressed him in his favourite clothes. They made all the funeral arrangements for me too.
Every day now is tough. Not a day passes when I don’t struggle at some point. But the memories I have of my little boy at the end of his life are the happy memories Brian House gave to me. And I will always have those.
What drives me forward now is the desire to help the children who desperately need Brian House today. My family, me and ‘Charlie’s Superheroes’ have all raised money so that other children can have the chance to know their incredible care. And I know from Brian House’s fundraising team that you’ve also supported this incredible local charity. Thank you so, so much. This is the generosity that gave me and Charlie those three weeks together at the end.
Today, I want to implore you to make another contribution to help another child to receive their special, unique care this Christmas. Every hour of the care Charlie had from Brian House cost £18.74 – but to us it was priceless. Please, buy an hour’s care over Christmas for another child (more if you can!) and be a Christmas superhero this year to another family.
Brian House will be caring for families just down the road from you who are facing their last Christmas together. They can give them the care they need if we, the community they serve, give the money they need to fund that care. Please, do what you can.
Thank you very much. I hope you and your family have a wonderful Christmas.
Emma
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