About Our Jack
OUR son Jack is everything an eight-year-old should be. He is cheeky, excitable and a big softy at heart. He loves to make dens, play hide and seek and wave his lightsaber like a Jedi Knight. He is enjoying his early steps on his journey into the big wide world. But what our beautiful son does not yet know is that he has a terminal, incurable disease.
In October 2011 we received the shattering news that Jack has Duchenne Muscular Dystrophy (DMD). Failing a medical breakthrough, Jack's life will follow a predetermined path, mapped out by this progressive muscle wasting condition. In short, he will no longer be able to walk by the time he reaches adolescence and will lose the use of every single muscle in his body thereafter. He may need spinal rods to keep him upright and ventilation to help him breath. Eventually his heart and lungs will fail and he will die.
There are no words to describe the utter devastation felt upon hearing that your child's life will be cut short because there is no cure. We have had the greatest pleasure watching Jack develop into the amazing boy he is today but now, unbelievably, we must prepare ourselves for his steady decline. And the worst part? Seeing him struggle as his body wastes away and being absolutely powerless to help.
Since his diagnosis, we are not ashamed to say that we have cried every day and have spent endless hours scouring the internet to find answers. Currently there is very little awareness of DMD and research into finding possible treatments is drastically underfunded. However, over the past few years, with help from charities around the world, human clinical trials have begun to take place with encouraging results. It's for this reason that we have set up our own charity, to help move things forward for Jack and other children like him.
We have always wanted a quiet family life and have never felt comfortable asking for anything but now is not the time to be proud. We cannot sit back and watch Jack ravaged by this condition if there is any chance that we can make his future a more positive one. From the bottom of our hearts we are asking if you can help join our fight to eradicate DMD.
You can contribute by making a a donation, organising an event or simply following us on Facebook or Twitter, and spreading the word about our cause. Time is precious to us now and for ANY support you can give, we will be eternally grateful.
They say that children with DMD accept it better than their parents but the day we tell Jack he is not well will be the toughest day of our lives. To know that we are facing a future without our beautiful son is impossible to believe. At least with your help we will be able to tell him that we gave everything we had to this fight of all fights.