Save Our Sons: A dad’s quest to cure his child’s illness reaps $850K

A dad’s month-long walking campaign to find a cure and support those living with Duchenne muscular dystrophy has raised a whopping $850K.

Braving severe weather conditions, including torrential rain, and starting at various times of the day and night, Elie Eid and his supporters remained committed in their undertaking to walk 7.9 kilometres each day through the month of March as part of the annual Walk 4 Duchenne.

He was accompanied by family, friends and families affected, corporate teams as well as ambassadors including, Ada Nicodemou, Lynne McGranger, Steve Menzies, Michael Ennis, Rob Shehadie, Adam Doueihi, Bruce Bolden, Mark Geyer, Tahir Bilgic, Karen Ledbury, Anthony Mundine, Brendan Jones and Amanda Keller.

Their mission? To raise awareness and funds to help those living with the childhood muscle wasting condition Duchenne muscular dystrophy.

“The harsh weather conditions we have faced are nothing compared to the tough journey that our families are on, on a daily basis,” founder of Save Our Sons Duchenne Foundation Elie Eid said after the walk.

“We will continue to walk in memory of those we have lost, to give hope to the kids of today and to give the kids of tomorrow a better future.”

What is the Walk for Duchenne?

The annual Walk 4 Duchenne, now in its eighth year and supported by Chemist Warehouse, is one of the Save Our Sons Duchenne foundation’s biggest fundraisers.

“Elie is starting at different times each day to represent the fact that Duchenne is continuously affecting those living with the condition on a 24-hour basis,” Save Our Sons foundation general manager Sandy Kervin explains.

The 7.9 kilometres is significant as the condition is caused by mutations in the dystrophin gene, which has 79 exons (coding areas).

The Dystrophin normally protects muscle cells from damage and without it, the muscle cells deteriorate.

What is Duchenne muscular dystrophy?

The symptoms of Duchenne muscular dystrophy usually appear in the tender years between two and five.

A child might have difficulty with movement, such as running, jumping and climbing. They might frequently fall over, have enlarged calf muscles and show delays in language development.

For Elie Eid, whose now teenage son Emilio was diagnosed with the muscle-wasting condition just before he turned two, the diagnosis was devastating.

“The moment we received the diagnosis, our whole world stopped,” Elie says.

“It was a hard pill to swallow.”

Duchenne is the most common and severe form of muscular dystrophy.

It impacts all races and cultures, affecting about one in every 3500 newborn boys and one in 50 million girls.

To date, there is no cure and those with the condition have a life expectancy in their early to mid-20s.

How fundraising helps kids with Duchenne’s

Funds raised during the 2022 campaign go towards innovations including research, clinical trials and specialist nurses in children’s hospitals, as well as investment in the following:

  • Getting Treatment Earlier.
  • Providing Vital Care.
  • Improving Quality of Life.
  • Funding Future Therapies.
  • Improving Access to Clinical Trials.

How the $850K for Duchenne’s was raised

The funds were raised via in-store fundraising at Chemist Warehouse stores around the country, in addition to promotions by Swisse and Oral-B in which a portion of sales was directed to the foundation.

Click here to support the Walk 4 Duchenne and other events.

Written by Joanne Trzcinski.

Updated May 4, 2022.