Jack has Duchenne muscular dystrophy, which on some days can leave him sore and unable to do much. So, to help him play and have fun when his body aches, Satan’s Little Helper stepped in to lend a hand.
There’s no cure for Duchenne muscular dystrophy and seven-year-old Jack, who was diagnosed in 2020, will end up in a wheelchair permanently.
“All his muscles will deteriorate,” explains his mum, Haley. “He’s currently struggling with his legs but everything will be effected by it – even his lungs and heart.”
Haley first realised something was wrong when he wasn’t using his legs as other kids would.
“He couldn’t get off the ground without using his hands to push his legs up,” says Haley.
Now, Jack’s life is one of constant medical supervision. He takes up to five different medications a day and has regular x-rays and check-ups to make sure his lung function is still adequate. Jack also has regular physio appointments and sees three paediatric doctors.
“He even has his own masseuse; he’s such a fancy kid,” jokes his mum.
Constant medication
Sadly, Jack’s constant steroid intake has made his bones fragile – and at the time of writing, he was recovering from breaking his back after a friend accidentally fell on top of him.
To make matters worse, Haley was struck down with Covid and had to rely on Jack’s grandparents for support.
“They took him to hospital, where they did a Covid test on him and it came up positive. That was a silver lining, because it meant I could stay with him while his back healed.”
The past three years have been tremendously difficult for Jack – but it’s also taken its toll on Haley.
“I’m still learning about muscular dystrophy and I’ve learned that Jack is his own person and has his own reaction to the disease. On a personal note, I’ve got better at embracing things that help him, such as a wheelchair.
“We originally got it in 2021 but it stayed in the garage for close to a year because I was in denial about his condition. I didn’t even want to look at it but I’ve got over that now and it’s been a lot easier for the whole family to get out and about.”
It’s okay to ask for help
Haley has also got better at asking for help – and when she told Satan’s Little Helper about Jack and his condition, we were happy to get involved.
Jack loves being in the water, because it takes pressure off his body, so, to make sure he can do it more often, we got him 60-swim pass to the local swimming pool.
“He loves getting in the water! He can jump around and play in the water, which he can’t do normally, and he has heaps of fun. It’s a great low-impact exercise and it’s a great way for him to exercise without really knowing it, which is something I struggle to get him do at home, because it hurts and makes him feel uncomfortable.”
Satan’s Little Helper also hooked him up with a Prezzy Card, which Jack used to get a new Hot Wheels game for his Xbox – perfect entertainment for the days when he can’t do much!
“He really wanted a car game and he loves Hot Wheels. All the cars in the game match the ones he has here at home, so every time he gets one that matches his real-life collection, he gets super excited. It’s really nice to see.”
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