Dylan Azzopardi is your average nine-year-old boy.
The Caroline Springs kid loves his footy and has a cheeky smile that lights up the room.
The only difference is that Dylan is living with a rare muscle disorder, Duchenne Muscular Dystrophy (DMD), which will rob him of the ability to walk, talk, swallow, and eventually breathe. The disorder is fatal and there is no cure, but the family is remaining strong in the face of adversity.
Parents Damien and Deana say it’s been a bumpy road since they first received the news.
“We found out when Dylan was two years and seven months old, and I was 35 weeks pregnant with Jake [their second son] so it was a real shock,” Deana said.
“They say mothers instinct is always right, and I knew for a long time there was something wrong. He was very floppy as an infant, wasn’t keeping up with other kids as a two year-old and he was complaining about back pain.
“We took him to numerous doctors who couldn’t figure it out, and then finally one good pediatrician figured it out on the spot. That was two days before Christmas 2009.”
DMD is caused by an absence of dystrophin, a protein in the muscles that helps to repair and strengthen muscles. It is likely Dylan will lose the ability to walk within the next three years, and he is only expected to live to his mid to late 20s. Despite the grim prognosis, the family has been coping admirably.
“It’s basically been about giving him the best possible life we can now, while we can,” Deana said. “How do you tell a nine-year-old that he is going to die, or may not walk again? You can’t do it, so he knows he has weak muscles but that’s all we’ve told him. He wants to be the next Western Bulldogs recruit, how do you tell a kid that will never happen?”
Up until a few weeks ago the family was coping with Dylan’s needs, however he had a fall and broke his ankle and is in a wheelchair.
Due to his condition, his muscles don’t repair, which means he is at risk of never being able to walk again. Dylan requires intensive physiotherapy and rehabilitation to get back on his feet in the short term, but in the long term he will require even more support.
Friends of the family have set up a GoFundMe page to raise funds including covering the cost of an electric wheelchair ($45,000).
“We’ve been overwhelmed with the response,” Deana said.
“We’re getting people donating from overseas, strangers we don’t know.”
“We’re not the kind of people to ask for help, but if people offer we can’t really say no.”
www.gofundme.com/stand-tall-for-dylan
