House Heroes: Save our Sons

Elie Eid is a father fighting for his son’s life. In 2005, two days short of his second birthday, Elie’s son Emilio was diagnosed with Duchenne Muscular Dystrophy (DMD).

DMD is a severe muscle-wasting condition that affects one in 3,500 children, 99 per cent of whom are boys. Currently, there is no cure for the disease and it has a 100 per cent mortality rate.

That’s something this inspirational father is determined to change.

In 2008, two years after Emilio’s diagnosis, Elie founded Save Our Sons Duchenne Foundation, a charity set up to help fund clinical trials aimed at finding a cure for DMD.

To date, the team has raised more than $10 million.

“Before Save Our Sons I was a train driver and I used to drive a train that had brakes and that would stop at platforms,” Elie says.

“Now I’m driving a different kind of train. I’m driving the Save Our Sons train and this train has no brakes.”

“There’s only one stop. It’s the finish line and it’s the cure.”

“Duchenne robs our boys of many, many things that we take for granted,” he explains. “Like walking, like running, like jumping. There’s no cure and no-one survives. When Emilio was diagnosed I had to save him. It’s just a father’s instinct to fight, to protect the family.”

save our sons duchenne foundation
William, Hudson and Max Shorter (middle row from left) with fellow Duchenne sufferers.

Symptoms of Duchenne usually appear between ages two and five years and may include difficulty running, jumping, climbing and rising from the floor, as well as frequent falls, enlarged calf muscles, toe walking and delays in language development.

The first muscles affected are those around the hips and upper thigh. Weakness gradually progresses to include all the muscles used for movement and the muscles used for breathing and the heart.

“If you look at our boys, the shape of their faces, the symptoms are all the same and so when I see them, all I can picture is my son in each child. Along the way I found myself not fighting just for my son but for all our sons.”

The charity is already funding five specialist nurses in children’s hospitals across five states, as well as providing scooters, breathing machines, and standup wheelchairs.

Emilio is now 13-years-old. With no cure found, he may spend the rest of his life in a wheelchair but passionate dad Elie says he’ll never give up.

“I believe my son’s a blessing and because of him we’re going to make a difference. Currently there is no cure but what we can do and what we are working towards is halting the condition,” he says.

“In a perfect world we eradicate Duchenne, the word no longer exists and our kids or any kids born with Duchenne, with muscular dystrophy, have a future and a life. That’s a perfect world.”

Learn more about Save Our Sons Duchenne Foundation: