One of the toughest captains to ever lead the Baggy Greens, Steve is riding the six-day challenge with more than 60 other captains of industry to help raise awareness of Aussie kids with rare diseases.
“Each and every day is the hardest of my life,” says Steve mid-through the gruelling grind from Sydney to Byron Bay.
“I can’t lie, this is the hardest thing I’ve done by a long way; 10 hours a day with a lot of elevation.
“But we want these kids to be recognised; we want them to have a voice. And we want people to stand beside them. For too long they’ve been by themselves – they’ve been the orphans of the health system.”
Children such as Bradley and Thomas, who had Arts Syndrome, a rare genetic disorder that causes deafness from birth, progressive muscle weakness, visual impairment, learning difficulties and the loss of reflexes.
The disease is fatal during childhood (the majority die before 5 years of age) due to high levels of infections, especially of the upper respiratory tract.
But Bradley, 18, and Thomas, 17, surpassed all expectations until their tragic passing from a simple cold in June, 2015, within two days of each other.
“They had a great spirit and will never be forgotten,” said Steve, CEO of the Steve Waugh Foundation, which gives vital support and a place for families to turn to.
“I’ve met most of the kids in our foundation…they’ve all got a fantastic attitudes and the parents are incredible.
“They’re doing it without a lot of assistance, medication is often very expensive, diagnosis is often delayed and there is no respite care for the parents.”
Steve says it’s that kind of attitude he and his fellow riders are drawing on to get them through the long hard slog of 150km a day on the road.
“We’re riding for these guys and we know how tough they’re doing, so we’ve just got to get through it somehow.”
Each day is dedicated to a particular child suffering from a unique rare disease and Steve is asking for the public to get behind the cause by donating through the foundation’s website.
There you can also send Steve a message of support while he’s in the saddle via a FitBit Surge to help keep him motivated.
Spin classes at Fitness First in Bondi, Sydney, are joining in too thanks to a Google cardboard virtual reality (VR) headset and an Android phone.
The unique vision helps the class learn about rare diseases and get a workout at the same time.
“The VR headset is like nothing I’ve experienced; it actually felt like I was riding right alongside Steve, very cool,” said former professional cricketer Brendon Julian, now a Fox Sports commentator.
