Save Our Sons Foundation leads 92km walk in Perth to raise funds for children with Duchenne muscular dystrophy

For four days, a group of determined walkers trekked across Perth with a powerful message driving every step.

“We walk for those who can’t,” said Elie Eid, founder of the Save Our Sons Foundation.

Families affected by Duchenne muscular dystrophy and their dedicated support team set off on Thursday to take on the extraordinary challenge: walking 92 kilometers across Perth over four days to raise funds and awareness for the condition.

Among the participants was Joshua Jones, 13, who lives with Duchenne.

Determined to be part of the event, Joshua’s family pushed him in his wheelchair so he could complete the four-day effort.

“He hasn’t stopped smiling the whole time,” said his mother Michelle Jones.

“I thought he’d only do it one day, but he’s done all four, he loves it.”

camera iconThe Save our Sons charity walk concludes in Langley Park, Perth, on Sunday. Pictured are Michelle Jones and Joshua Jones, 14. Carwyn Monck Credit: Carwyn Monck/Western Australia

For many children with Duchenne, walking becomes impossible between the ages of seven and 12, as the condition progressively weakens their muscles.

There is no cure and, for most people diagnosed with this condition, life expectancy is short.

Among those showing their support this year was Leanne James, 63, who traveled from Melbourne to take part in the Perth event.

Ms James first joined the walk 11 years ago and made a personal promise that she would keep walking until a cure was found.

“I’m a mother, I’m a grandmother, and it struck a chord with me to see children who want to be included, who want to have a normal life that everyone else can’t have,” she said.

“11 years ago I committed to walking until the day we found a cure. That’s why I’m still here 11 years later.”

camera iconThe Save our Sons charity walk concludes in Langley Park, Perth, on Sunday. In the photo, the participants at the finish line. Carwyn Monck Credit: Carwyn Monck/Western Australia

Over the past decade, he has raised $180,000 for Save Our Sons through his fundraising efforts.

But his most personal tribute is the one he hides in his shoe.

“During the first year of the walk, I wrote down the names of the kids I walked with,” he said.

“So now every year I add the names of the children. Unfortunately, some of those names include children who have died from this disease.

“The rationale behind this was that every step I take, I walk with the names of those children in mind and in memory.”

Along the way, the group stopped at 16 Chemist Warehouse stores across the city, and the national pharmacy chain supported the initiative.

The walk, known as Walk 4 Duchenne, has become the Save Our Sons Duchenne Foundation’s primary fundraising event since it began in 2015.

Save Our Sons Duchenne Foundation is Australia’s leading charity supporting families affected by Duchenne muscular dystrophy, a serious condition that affects approximately one in 5,000 boys and, in rare cases, girls.

For Eid, the mission is deeply personal: her son Emilio was diagnosed with Duchenne in 2006.

“They told me to take it home and enjoy it while I still had it,” he said.

“I had no intention of losing him. I know it’s not in my control but I can do what I can, so I set up the charity in 2008 as my fight for my son and it has become our fight for all our sons and daughters.”

camera iconThe Save our Sons charity walk concludes in Langley Park, Perth, on Sunday. In the photo, Elie Eid and Sunny Narula. Carwyn Monck Credit: Carwyn Monck/Western Australia

This year, Emilio celebrated his 22nd birthday, a milestone his father once feared he would never reach.

Each year, Walk 4 Duchenne raises $1 million through the fundraising efforts of those who participate.

The money helps fund nurses trained in muscular dystrophy care.

“We just want our families to have access to care, better care and quality care,” Mr. Eid said.

“Save Our Son has been funding nurses on pediatric wards so we can be clinically prepared and bring clinical trials to Australia.

“And in Sydney alone, they went from two to 12 trials thanks to these nurses.”

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