All About Joel

Joel is now 9 and Duchenne is starting to take a hold of our little man.  Some time ago we put the below video together for one of our events, this gives a little more detail of his story and facts of Duchenne Muscular Dystrophy. It was designed to the music of Fix You by Coldplay, a song which is a very hard listen these days…

 

 

Our little boy Joel has been a typical, extremely cute, loveable and cheeky little boy growing up. He enjoys all the usual things that boys do, trains, pirates, dinosaurs and as he has grown it is now superheroes and Nintendo Switch that he loves. He really enjoys spending time playing with friends, his big sister and little brother and his pets.

Joel’s childhood has been somewhat different from most however.  In 2014, just before his 3rd birthday, Joel was diagnosed with Duchenne Muscular Dystrophy. (DMD)  At the time it was something we had never heard of and research quickly made us aware of just how awful this diagnosis was. We are devastated that our beautiful son has this terminal, incurable disease. His only hope is that researchers have a breakthrough in time to save him and the hundreds of other boys that have this terrible disease.

Failing a miracle cure Joel will now follow a predetermined path from this muscle wasting condition. He will lose the use of his legs first needing a wheelchair be adolescence and then other muscles thereafter. Eventually his heart and lungs will fail and we will lose our Joel.

Joel is starting to use his wheelchair a little more but at the end of last year he was accepted onto a drug trial. We hope this can give some positive results and ‘buy some time’ for the hoped for miracle cure.

It is difficult to put into words the heartache and devastation Joel’s diagnosis is causing us, being unable to help, mend and protect your child is soul destroying. Now, with differences becoming more apparent between Joel and his peers his emotions and mental state are very delicate. The only thing we can do is bring Joy to the time he has and show him how much he’s loved every day. This is why set up Joy for Joel.

We have focused on providing Joel all he needs as he grows, ensuring he has all of the equipment on hand and living on the ground floor to make life as easy as possible and offer as much indepent living as possible. We also aim to contribute to research and raise awareness of DMD and provide Joel with as many positive experiences as possible during his life. So far we have made many memories and the ‘brand’ Run DMD is now known locally for the great support many runners have shown in various running events. We have hosted Golf events and 5 a side football a superb charity ball arranged by DMD Mums as well as a Gameshow evening and an attempt to break the world record for the longest loom band!

For now, Joel’s battle with Duchenne continues, we all hope that time and medical progress means it is one he has a chance of winning.