You may not have heard of Duchenne. I certainly hadn’t until I met Maddox. His mum Fiona explained to me that most people, even medical professionals, don’t know what it is. But Duchenne muscular dystrophy is the most common muscle disease of childhood, affecting one in every 3500 children.
It has a 100% mortality rate. There is no cure.
More than 99% of children affected by Duchenne are boys. It slowly takes away their freedom by causing their muscles to weaken and waste away over time. Starting around the hips and thighs and then taking over all muscles used for movement, most boys are in a motorised wheelchair by the time they are 12. It ultimately attacks the heart and the muscles used for breathing, causing death from respiratory or heart failure, usually before 30 years of age.
Maddox was diagnosed with Duchenne in 2014 when he was four years old. He had always had some issues with milestones, struggling to run, hop and jump. He fell over a lot, was somewhat flat-footed and had an unusual gait. He’s now nearly seven, and while he can still run and play he’s not supposed to wear himself out, or do too much repetitive movement. This is very difficult when you have a twin brother (Xander) and an older sister (Scarlett, 9) to keep up with! He does use a wheelchair, but mainly just to prevent him from getting too tired.
When I first met him, he unknowingly summed it all up for me.
“These monsters are slowing me down! I can’t run fast enough!”
But Maddox, of course, was playing Sonic the Hedgehog on the iPad. While his brother and sister were at school with their friends, he was in a hospital bed having an infusion, on a drug trial that aims to counteract the bone-weakening side effects of the steroids he has to take every day. The steroids will help to keep him mobile for longer, but can also cause bone fractures, weight gain, mood swings, difficulty sleeping, headaches, stomach irritation, growth suppression, raised blood pressure and increased susceptibility to infection.
But he appears unfazed by the situation, acknowledging it only with a cheeky flex of the bicep when Fiona talks about the medicine making him stronger. Such is the spirit of Maddox – he never complains. He’s just focused on his task – to outrun the monsters and have fun.
He’s cheeky, with a brilliant sense of humour, and if you ask him what his superpower is, he’ll tell you it’s cuddling his dog Gracie– she’s a super-dog! Maddox just loves cuddles in general, and it’s difficult to imagine a future where he will lose the ability to put his arms around his loved ones.
But it’s easy to see where he gets his fun and loving nature from. In the face of the struggle her son has ahead of him, Fiona is grounded and incredibly positive. She says:
“There are people worse off than us… I have a strong, happy family and great friends. We live through the spirit of our children.
We stress and worry about how life affects our kids, but they are so resilient and full of adventure. Maddox isn’t scared of having a wheelchair, only about knowing how the remote control works. They are so strong.”
Maddox’s dream is to see the snow, and the family would love to take him on a caravan holiday around Australia while he is still well. To help, friends of the family have set up a fundraising page that also aims to ease the financial burden that comes along with renovating their house and updating their vehicle to accommodate a wheelchair.
But Fiona says the most important thing is to increase community awareness about Duchenne, and it’s cruel implications for boys like Maddox. Awareness is the key to funding for research, the only way to a cure.
It is also important for early detection – if parents and medical practitioners are aware of the disease, it can be tested for and treated sooner, ensuring the best possible outcome. Duchenne is genetic, and some families have two or three boys with the condition. Early detection also means that families can be offered genetic counselling.
You can help spread awareness of Duchenne by:
- Sharing this story with your family and friends
- Follow Moments with Maddox on Facebook, and like and share their posts – you will be rewarded with adorable pictures of Maddox and his siblings, and keep up-to-date on his progress
Maddox’s family, friends and supporters are spurred on by their hope for a cure, but their biggest fear is that it wont come in time for Maddox. Because without one, the monsters will eventually catch up to him.
You can purchase prints of Maddox’s artwork here.