Alex means the world to us, he’s now 17 years old. He’s doing incredibly well for a young man with Duchenne. But life hasn’t been easy for him. Diagnosed shortly before his 4th birthday, he’s lived a relatively normal childhood. However, he must take lots of medicines every single day, must attend many hospital appointments throughout the year. Including physiotherapy, paediatric neurology appointments, 3-monthly clinical trial appointments in Newcastle, bone density scans, heart check-ups and MRI scans, the list goes on. He’s taken part in clinical trials most of his young life, all designed to bring new treatments to the entire Duchenne community.
Everything Alex does is done with a smile on his face. He tries not to let Duchenne define him and will do everything in his power to get on with life and lead it to the best of his ability.
Don’t get us wrong, there’s plenty of things he’s unable to do for a while now, walking on a beach, getting into the sea, playing football or any kind of contact sport, walking long distances is very hard. He uses a part-time wheelchair, although he prefers not too if he can.
He broke his hip when he was just 9 years old, as his bones aren’t as strong as his peers from long-term steroid use. He’s way more likely to break a bone with his condition, and if this happens, it is likely to put him into a wheelchair permanently. He falls frequently, as his knee just goes in on itself and he’s down on the floor. Always covered in bruises, but that’s his determination to continue walking for as long as he can. He will not be defeated!!
It’s important children living with Duchenne can talk about their condition (or not if that’s what they wish). Mental health and their wellbeing play an important part. This is where Alex’s Wish comes in, the love and support he’s been shown over the years is inspiring. It’s made him feel incredibly supported in so many ways. It gives him hope for his future. He feels inspired to make a difference for not only him, but everyone else living with Duchenne. We see this with many other families and have been encouraged by their kind words that the work we do is having a positive difference to them.
He knows more than anyone, that Duchenne robs you of doing the things you love most. He knows he’s one of the lucky ones, still walking at 17 years old. Many children lose their ability to walk by early teenage years.
Our ‘Be More Alex’ outlook on life came from Alex’s attitude to life – when life gives you lemons, make lemon meringue pie!!! He always looks on the positive side of things and doesn’t let Duchenne get him down. He’s our inspiration – we feel if he can do it, then so can we.