It has been a very difficult couple of years, getting our heads around our new and uncertain future. It’s almost been a period of mourning for the future we thought was in store for our beautiful little boy.
We all take things for granted. Our children go to school, grow up, go to university, take their driving lessons, leave home, meet someone, get married, have children and so on. But we’ve had to quickly learn that this is not something we can take for granted – not unless we can find a cure fast!
The most difficult bit is normal daily life. All it takes is for Alex to say something like mummy when I’m your age or when I have children. Then bang it hits you all over again. Your world stops for that split second. Why has Alex got Duchenne Muscular Dystrophy? Why us – it’s not fair. This is a battle our family face daily. It’s not easy and it doesn’t get easier. But what it does do is drive you to do something about it!
I’m proud to say that we have come on a great deal during that time. As a family we’ve done many things we would not have done if it hadn’t been for Duchenne. We’ve met so many wonderful people going through the same battle we are – and it’s refreshing to know we’re not the only ones. I’ve conquered my fear of flying and took to the skies and jumped out of a plane at 13,000 feet! Andy had run two London marathons. Alex’s grandparents have organised garden parties and a themed evening. Plus we’ve raised thousands for Action Duchenne and Muscular Dystrophy through various events and met so many generous and wonderful people along the way. It really is heart-warming how generous people can be.
The biggest change for me personally is the need to make the most out of life every single day and take time out to really appreciate it. We are so busy running around like headless chickens planning the next big event. But it’s the small things that matter most. At least now I appreciate the insignificant things in life – the important stuff.
Its now July 2012 and as we launch Alex’s Wish – a charity dedicated to helping fund a cure for this disease – we have so much hope and cannot wait to get started. We’ve launched our website www.alexswish.co.uk which is all about trying to make miracles, dreams and one big wish happen.
We have one goal and that is to fix Alex’s poorly muscles so he can continue to do the things he loves most. But we cannot do it with out others and urge you all to get involved in anyway you can.
Here’s to Alex’s Wish charity being a huge success.
Emma – Alex’s mummy x