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Jack Johnson 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 he does not yet know is that he has a terminal, incurable disease. 

In October 2011 Andy and Alex Johnson 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. They have had the greatest pleasure watching Jack develop into the amazing boy he is today but now, unbelievably, they must prepare themselves 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 they tell him he won’t get better.

The worst part will be seeing him struggle as his body wastes away and being absolutely powerless to help.

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 the Joining Jack charity, to help move things forward for Jack and other children like him. 

You can contribute by making a donation. Time is precious and 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. Andy and Alex will not take a backward step in this fight and with your help can hold and love their son for a very long time.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell on or send  unwanted emails. Once you donate, they'll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligable donation by a UK taxpayer. So it's the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.