Andy & Alex Comment

Our son Jack is everything a four-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. In a few months time he will start school and cannot wait to begin 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) and may not live to see his 21st birthday. 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.

The heartbreaking thing in all of this is if Jack walked in the room now you would not know anything was wrong with him. But what hurts daily is thinking of the day we tell him he won’t get better.

The worst part for us will be 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 is 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, however small, 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 donation, organising an event, taking part in an event or simply adding us onto your facebook or twitter page. 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.   We will not take a backward step in this fight and with your help we can hold and love our son for a very long time.

All our love 

Alex and Andy Johnson