About Jack

Our son Jack is everything a five-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). 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.