Elie Eid will walk 351 kilometres from Albury to Melbourne to help fund research to develop a cure for the life-threatening neuromuscular condition his eleven-year-old son Emilio has.
It is the second long-distance walk the Campsie resident will complete for Save Our Sons, the charity he founded in 2006 after Emilio, now in Year 6 at St Joseph’s Catholic Primary Belmore, was diagnosed with Duchenne Muscular Dystrophy (DMD) at age 2.
The genetic disorder causes muscle wasting, leads to reduced mobility and breathing and heart complications.
“So far there’s no cure,” Mr Eid said. “As a father I refuse to accept it. Save Our Sons is my way of making a difference.”
I’ve been blessed to have people around me who I call angels on earth. Without these people we can’t do what we do.
In 2015, the group walked 320 kilometres from Sydney to Canberra to introduce then Prime Minister Tony Abbott to the work and mission of Save Our Sons. They will depart from NSW border town Albury on Friday, April 15 for the two-week walk to Melbourne’s Federation Square.
Mr Eid will be accompanied by a core team of supporters including workmates, physiotherapists, podiatrists, safety crew and employees of event sponsor Chemist Warehouse as he pushes Emilio the distance in a wheelchair – a symbol of the fate of any child with the condition as their muscles deteriorate.
SOS has raised more than $4 million in eight years to fund clinical trials for possible treatments by doctors in Australia, America and the United Kingdom. Proceeds from the walk will also purchase breathing machines and stand-up wheelchairs to improve quality of life for the children affected by the condition.
“The trials we are funding are very specific, life-changing trials,” Mr Eid said. “ They potentially can halt the condition and give these kids a chance at life because, as you know, the heart and lungs are muscles, and unfortunately they are what go at the end.
“I’m representing all parents on this walk, because it’s tough. I also do this for the kids that can no longer walk. I want to give some hope to the kids of today and the kids of tomorrow, to give them a potential future.
“All money we raise through this walk will go towards new, exciting trials that could potentially be in Australia as clinical trials within the next year or two. We’d like to put a nurse in every neurology ward of every major hospital around the country. The first two nurses will go to The Children’s Hospital at Westmead and the Murdoch Institute.
“I’ve been blessed to have people around me who I call angels on earth. Without these people we can’t do what we do. A lot of the parents are blown away. You see in their eyes they know there’s somebody out there not only fighting for them, but with them.”
Mr Eid praised the St Joseph’s community for their support of Save Our Sons and of Emilio, who has access to a lift and teachers’ aides at school.
“They’ve been brilliant and very accommodating of his hospital visits and appointments,” Mr Eid said. “For people like us it makes an absolute difference. To see that support coming from the school community and heads of the schools is nice. It helps band-aid the wound if you like.”
Emilio will be captain during the walk and set the pace of the group from the front of the pack, communicating with the support vehicles by radio so they can keep pace.
His former principal Antonia Delores, now principal at St John’s Catholic Primary Auburn, will also take part in the walk for a second year.
Emilio is the eldest of four siblings and enjoys swimming and watching TV in his spare time. Emilio said he enjoyed last year’s Canberra walk. “It was good and it was fun,” he said. “I liked every part.”
Duchenne Muscular Dystrophy affects about one in every 3500 children, about 99 per cent of those are boys.
To learn more about Save Our Sons or to donate, visit: saveoursons.org.au.