A walk for Zachy

A MOTHER determined to help find a cure for Duchenne muscular dystrophy (DMD) – a genetic condition that affects one in 5,000 live births including Chrissie Stobbs’ six-year-old son – is hosting a community awareness walk on Saturday March 9 in Torquay.

Ms Stobbs’ son Zachy was diagnosed with DMD in May 2015 when he was just two, an earthshattering reality the mother of two said she’s been running away from for a number of years.

“One day you’ve got a healthy two-year-old then the next day you’re told he will lose the ability to walk,” she said.

“We were living in Dee Why, Sydney, at the time Zachy was diagnosed. We moved to Mount Duneed and I basically pretended it didn’t happen. Four years later, it’s only now that I’m ready to accept and talk about it.”

According to Muscular Dystrophy Australia (MDA), DMD is caused by a lack of dystrophin (protein) which causes muscles to deteriorate and break down, leading to progressive difficulty with walking and general mobility.

The condition primarily affects boys. Spending so much time in anticipatory grief and self-blame, Ms Stobbs has struggled to come to terms with the debilitating disorder that’s hindering her son’s ability to live a normal life.

“I hold him at night and wonder, will you ever have a girlfriend? Will you travel?” she said.

“You see these videos of kids who are housebound, rolled over in bed, fed through tubes… and you begin to mourn the loss of what you thought life was going to be.”

Despite her worries as a mother, Ms Stobbs has become an active member across several parent support groups on Facebook and works alongside Save Our Sons Foundation – the peak body for Duchenne muscular dystrophy in Australia – to connect with other families and support DMD research.

“I am part of the reason why these guys (Save Our Sons) get up and do what they do every day,” she said.

“It’s about time we contributed to the cause as a whole, and now’s a good time to raise awareness in the local area.”

Walk4Zachy will kick-off at 9am from Point Danger carpark before heading back to Cosy Corner for a swim and picnic.

The goal is 7.9 kilometres to raise funds for Save Our Sons foundation in honour of Zachy and other children in the local community living with DMD.

For more information, visit walk4duchenne.com.au/donations/team-stobbs.