Alfie is six-years-old and very affectionate. He loves to sit and stroke your face. He’ll say “love you Mummy and Daddy”. He has beautiful big brown eyes and eyelashes that stretch for days! He also has a very serious illness that means he will have a short life.
In February 2018 Alfie was diagnosed with Duchenne Muscular Dystrophy, a progressive muscle wasting disease that has no cure. No one can be sure exactly how long he will live. But he will have a short life. For mum, Louise and Dad, Kieron, that means facing up to the prospect that they will outlive their son.
“It’s hard enough when your child has a cold or they’re sick. You just want to take it away from them. To be told that your child has an incurable disease is the most devastating news any parent can receive.”
Every parent’s worst nightmare
Alfie had always struggled to keep up with his friends. He couldn’t sit up properly as a baby – his family were told by physio’s that he had a weakened core. He was delayed with his crawling, walking and talking – they were told “he’s a boy, he’s lazy! He’ll catch up”. It took the family almost two and a half years to actually get to the bottom of why he was delayed. Despite pushing and pushing to get him referred to a Paediatrician, the process ended up taking a whole year as the first referral got lost in the system.
Alfie’s diagnosis hit me very hard and we were offered no ongoing support from our local hospital.Kieron, Alfie’s Dad
To make matters worse, Kieron and Louise received Alfie’s devastating diagnosis over the phone – left alone with no support: “Alfie’s diagnosis hit me very hard and we were offered no ongoing support from our local hospital,” says Kieron.
“I broke down uncontrollably at home, at work, in the car, I’d never experienced pain like it. I just felt so alone but still had this overriding feeling that I had to be the strong one for our family. After all, I’m the Dad, the man of the house, the main breadwinner and most of all, the one who protects us. Except I had no answer as to why this had happened to our family and most of all to my little best mate.”
A new normal
The news seemed all the more cruel, as in the very same month Alfie was diagnosed, the family had moved into what was supposed to be their ‘forever’ home – a word that seemed loaded with uncertainty and pain for them now. Kieron says “it felt less like home and more like somewhere to sleep… all the plans we had seemed to go out of the window.”
“As a Dad you have many hopes and aspirations for your children. You imagine proud moments such as, walking your daughter down the aisle or watching your son play his first football match. Moments that make you feel proud to be their Dad.” Feeling like they had nowhere to turn, Kieron and his family were left grappling with how their dreams for their children could possibly be a reality now, and if they couldn’t, how they would all get through.
The strength to find support
Alfie’s Dad is a firm believer that when something life-changing rears its head, you can either sink, stay afloat or swim. For Kieron and his family, they chose the latter – likening their efforts to swimming the channel.
No family should have to suffer alone. Alfie’s family were extremely lucky to have an amazing network of friends and family to pull them through a few very dark months after Alfie’s diagnosis. And they were determined to give Alfie and Mila-Rose a childhood full of memories that would last a lifetime. And the most important step was that first one, into their new lives, with their heads held high – using Alfie’s cheerful personality as their guide
Having a child with a life-limiting condition can be isolating at the best of times. Thanks to Together For Short Lives we know we’re not alone.Kieron, Alfie's Dad
“Alfie is a cheeky little chap whose smile lights up any room he enters,” says Kieron. “No Alfie can’t run, climb, ride a bike or scooter like his friends but he doesn’t let this bother him and his smile never fades. He just gets on and if he falls down, he quite simply gets back up again.”
Help is here
Together for Short Lives is now working with the family, helping them to make the most of every moment they have together. We can’t save Alfie’s life, but we can and will help him and his family to treasure their time as a family. “Having a child with a life-limiting condition can be isolating at the best of times,” Kieron says. “Thanks to Together For Short Lives we know we’re not alone.”
But we don’t want any family to be left feeling like they have nowhere to turn. Kieron and his family had to face up to the scariest, most devastating news of their lives alone. It shouldn’t be this way. With your support we can reach out to more families like Alfie’s when and where they need us.