Can you imagine what it would be like to be able to walk, use your arms and all your other muscles, but over a period of time have your muscle tissues deteriorate so you can no longer do these things?
That is what happens with Duchenne Muscular Dystrophy (DMD). DMD is a muscle degenerating condition that affects 1 in 3500 Australian children – 99% boys. And it is a disease that I have had personal experience with. My cousin who was only a month younger than myslef died at 21 from DMD.
While he lived in Melbourne and I in Mildura, we still managed to see quite a bit of each other. I cannot remember back to when he was a toddler, but I do remember in primary school when he could walk and even run. I then remember this becoming much, much harder for him. There was more falling over and he was able to travel much shorter distances. I remember his parents using a giant stroller so he could walk most of the way on outings, but rest as needed. They did this for him when he visited Disneyland in America.
I remember his first electric wheel chair that he could climb in and out of. He would happily let his cousins, like me, have a test drive. I remember noticing that it wasn’t only his legs which were effected by the disease, but he had less control and strength in his arms. I remember when he received a three wheeler motorbike for his birthday and when they brought it to Mildura on a visit, how happy he looked when he was driving around the bush on it. It was giving him the freedom, which body couldn’t give him on his own.
I remember how the deterioration seemed to speed up and how hard it was to watch him try to do things he previously could do, but no longer could. I remember feeling guilty that I could still use all my muscles and took it for granted, when every large movement required significant concentration on his part. DMD is obviously devastating for those who have the disease, but it is also incredibly difficult for family and friends to watch too.
Save Our Sons founders Elie Eid and Julie Lancaster know first hand what it feels like caring for a child with DMD and they are actively involved in a campaign petitioning the Australian Government to match $1.75m raised by DMD charities, to help bring trials to Australia that could help stop the condition in its tracks.
Just one of the things DMD takes away from those who have it, is the ability to write. As a symbolic gesture for those who no longer have the ability to write, the Save Our Sons team have come up with the Most Powerful Arm Ever Invented. It is a self-writing bionic arm which will sign the petition for those who are no longer able to. It signs the petition in the hand writing of Jacob Lancaster – a 19 year-old from Sydney who has lost the ability to write due to DMD. A handwriting sample was taken from the last thing that he wrote, a Mother’s Day card and it has been turned into a font which the arm is using to sign the petition.
Currently at the time of writing this post, the Most Powerful Arm Ever Invented has made 20,107 signatures. For the next couple of weeks, you will find the Most Powerful Arm Ever Invented at Sydney’s Customs House, signing the petition on behalf of those who can’t and any other Australians who wants to support the cause.
If like me you are not in Sydney, but would like to support gaining additional federal funding for DMD, you can go to the Most Powerful Arm Ever Invented website and compete the petition online. You can then watch live as the Most Powerful Arm Ever Invented signs your name.
I am eternally grateful that through the lottery that is genetics, none of our four beautiful boys are affected by DMD. I am eternally grateful that I will not have to watch helplessly as the disease takes over and takes away their ability to move, to write, to speak and to breathe.
If you have a spare minute today, I would love it if you could have the Most Powerful Arm Ever Invented add your name to the list of those petitioning the Australian government to match the $1.75m raised by DMD charities and bring trials to Australia.