In Touch: Walking to Save our Sons
This weekend I'm going to have one eye on the thrills, skills, spills, emotions and drama of the representative games being staged over the three days, and one eye on an equally impressive spectacle – a group of passionate and dedicated parents and friends trekking along the Pacific Motorway and Hume and Federal Highways as they Walk to Save Our Sons.
I have often written about the generosity, compassion and care that are so prevalent in our magnificent rugby league community, and those qualities are rarely on show more vividly than amongst this very special group undertaking the Newcastle to Canberra marathon journey.
Imagine having your first child, a beautiful, perfect bundle of joy. Then imagine two years into the most amazing experience of your lives you find out this little human you have created is sick. Not with a cold, a sore throat or chicken pox, but with a disease so horrible and cruel there is no cure. Your baby is given a death sentence. You don't know when exactly. But you know that your child will struggle to survive past their late teens. Then imagine having to tell them.
This is the traumatic reality for Eli and Nancy Eid. Their beautiful boy Emilio is now 10 years old, and he has Duchenne Muscular Dystrophy (DMD). The age of 10 is when children with DMD usually become immobile - their muscles have begun to degenerate. By 12 years old they're usually confined to a wheelchair and by late teens most will die.
Emilio knows he isn't well. He knows he's not like all the other kids who run around and play at will, but he doesn't know yet that savage mortality statistic.
"How do you tell a 10-year-old boy he will die?" Eli Eid said to me.
"I want to be able to say to Emilio 'you have this disease... BUT... '"
He's looking for the 'BUT', and so SAVE OUR SONS was formed.
In 2008 Eli and his best mate Bass Aboud decided not to accept this fate, instead deciding that 'no cure' only meant 'no cure yet'. So far this incredible group of people have raised over $3 million, without one cent of government funding.
They work 24 hours a day, seven days a week because, as any parent will attest, once you have a child, loving and protecting them is all that matters. Eli is trying to save Emilio's life - and the life of every other child diagnosed with DMD.
I'm incredibly lucky to have been asked to help Save Our Sons and be one of their ambassadors. Getting to know the people involved has enriched my life in ways I can't even begin to describe. I have met some of the most inspirational people, especially kids - yes kids - who know their prospects of survival are slim, but who hope the work of Save Our Sons will save the next generation.
We are all guilty of losing perspective from time to time. I am sometimes ashamed about the things I get upset about and worry about. But this group of people is a lesson to us all in resilience, in hope and in never giving up. This is much more, however, than an incredibly sad story - it's also an incredibly uplifting cause, and the NRL community has played a huge role in supporting Save Our Sons.
The SOS Cup is played between the Bulldogs and the Tigers, and players from a number of different clubs have been touched and dedicate their time to helping in a myriad of ways - the Burgess brothers, Mick Ennis, Josh Reynolds, Robbie Farah, Dene Halatau and Chris Lawrence just to name a few.
So on Friday morning Eli takes over from the Newcastle team and begins a 350km walk from the charity offices in Dulwich Hill, Sydney to Parliament House in Canberra. He will be pushing Emilio in his wheelchair, 35km a day for 10 days. NRL players will be walking alongside them, rain, hail or shine, it doesn't matter. They're hoping to raise money and awareness, they want to fund clinical trials and they want to save lives.
This weekend if, like me, you aim to be visually ambidextrous and keep one eye on the footy and one eye on the progress of this devoted and enthusiastic group, go to the Save or Sons website - your interest, support and, if possible, donation will be most gratefully welcomed.