“Kieron doesn’t know how many Christmases he’ll have left with his son, Alfie.” Holly Willoughby’s opening line in the Together for Short Lives Christmas Together 2020 appeal.
When I heard that played back for the first time I just felt sick and a cold shiver travelled from my head down to my toes. When you hear yourself say those words it’s a reluctant form of acceptance but to hear someone else say those words, it’s a reality.
I’d watched the preview of the campaign video in the afternoon and that night I read Alfie his bedtime story then watched him innocently drift off to sleep. His eyelashes, that were so very beautifully described as ones that ‘stretch for days’, gave the occasional flutter. I just sat there at the end of his bed watching our beautiful little boy sleeping. I asked myself the question that I ask myself time and time again… Why Alfie? He doesn’t deserves the road that’s ahead of him, no family does.
Alfie’s zest for life is quite extraordinary! He’ll bounce up at 5am with the biggest smile on his face looking forward to the day ahead. Asking a hundred times over, ” What are we doing today, Daddy?” You just cannot feel a negative vibe around Alfie, he fills your heart with joy the moment you see him. He’s infectious, affectionate and whilst stroking your face he’ll kiss you gently on the cheek and say “I love you Mummy/Daddy”. Both he and his sister, Mila-Rose are the driving force behind everything we do. We want to fill their lives with the happiness and joy that they bring to us everyday in the hope that we are instilling a resilience and a fight that will stand them in good stead during the challenging times ahead.
As the parents of a child with a life limiting illness, we know that in comparison to his peers, Alfie is going to have a short life. No one can be sure exactly how short but in truth that can be said about us all really. We personally live in hope that one day a cure will be found for his condition, if not for Alfie but for the families of boys diagnosed in the future with Duchenne Muscular Dystrophy.
After working closely with Together for Short Lives during the first lockdown, it was put to us that they’d like to base their Christmas fundraising campaign this year around our story. As well as supporting our family, I’ve also been voluntary hosting Brews Brothers for the charity, a Zoom based support group for other Dad’s in a similar situation to myself. To be honest, I was a little hesitant at first as I’m not really that confident in front of a camera and I hate hearing my own voice played back! I then thought about the reason why I started Action4Alfie, that reason was to make sure that no family went through what we went through at the time of diagnosis. We were being offered a platform by one of the UK’s leading children’s charities to help other families to get the support they so deservedly require at the time of their child’s diagnosis.
Together for Short Lives is one of the UKs’ leading charities for children with life-threatening and life-limiting conditions, they help every child and family to get the very best care and support they can so they can make the most of every moment together. They support and speak up for children and families, and those that support and care for them. They are driving for a better quality of life and end of life for children with life-limiting and life-threatening conditions. They want to help change lives. (text c/o Together for Lives which can be found via this link https://www.togetherforshortlives.org.uk/about-us/)
The amazing team at Together for Short Lives very kindly arranged for us to have a Zoom call with one of their newest ambassadors, Chelsea and England footballer, Mason Mount. He wanted to get an insight into our story as he was to be filming a fundraising appeal. Mason also had the privilege of meeting Mila-Rose and Alfie who asked him no questions about football whatsoever but promptly asked him who his favourite Disney character was!!! Here’s me all set to have a good old chat about football with an England international but instead we’re talking about Disney films! To my delight though, meeting Mason has heightened both their interest in football so much so they both ask me if Mason’s playing whenever I’m watching football on TV!!! Only problem is they seem to think he plays for every team in the Premier League!!!
The appeal is now up and running and hopefully will ensure that this Christmas those families across the UK, caring for a seriously ill child, aren’t left feeling isolated. Together for Short Lives patrons Holly Willoughby and Peter Andre plus ambassador Mason Mount (< click the names to watch the appeal videos) are supporting the appeal so the charity can continue to provide vital care services for families like ours so that no family suffers through their child’s short life alone. They deserve to be able to treasure every moment they have together and for every pound donated, M&S Food will double your donation, up to a maximum of £50,000. Which means Together for Short Lives could support twice as many families like ours this Christmas.
If you’d kindly like to make a donation please follow this link https://www.togetherforshortlives.org.uk/get-involved/donate/make-donation/ or text ALFIE 10 or the amount of your choice to 70450.
Thank you so much.