One in every 3,300 young males around Australia crave the movement and physical strength of the men who play the greatest game of all.  Many of these boys and youths affected by Duchenne muscular dystrophy have not walked or moved their arms since childhood but participating in outdoor aquatic recreation is the best therapy. Living in North Queensland, means that local youths with Duchenne are all loyal fans of their local Rugby League team – now more so than ever since a huge parcel arrived from France this month.

Less than a week after making the application, Ebony Priest, of the Cowboys Community Foundation contacted Parent Project Australia President, Deborah Robins, in Cairns with the good news that PPA’s request for a “Tiralo” costing over $3,600 would be granted.

After lobbying local authorities and services unsuccessfully for at least four years to provide similar beach access facilities to Townsville, for the entire disabled community in Cairns, Deb decided to approach the Cowboys Community Foundation on behalf of her charity for Duchenne muscular dystrophy. “It is a shame that the authorities do not have the foresight to provide this facility for all disabled locals and tourists, but I am very glad that our boys can now access the local beaches to have fun with their families and friends”, said Deb Robins.

“My son is the eldest and heaviest affected male in the region, to my knowledge. Doug had not been on a beach in many years but he was simply elated to be pulled effortlessly through the loose sand to the water’s edge. He was particularly delighted to feel the wet sand under his feet. Such small pleasures are taken for granted by those of us who have the capability to visit the beaches at any time,” said Deb.  The boys will now be able to relax and access the beaches for pursuits such as swimming, beach combing, picnics and fishing.

The Tiralo has many advantages over Australian made beach wheelchairs including price and design. Younger boys, who have recently lost the ability to walk, will also be less self-conscious, as the Tiralo looks more like a beach buggy than a wheelchair.

So why did The Cowboys Community Foundation consider this form of muscular dystrophy deserving of their support? Duchenne muscular dystrophy is a progressive muscle disorder that causes loss of muscle function and independence. Symptoms of DMD usually appear between ages two and five years and may include difficulty running, jumping, climbing and rising from the floor; frequent falls, enlarged calf muscles and toe walking. The first muscles affected are those around the hips and upper thigh. Weakness gradually progresses to include all skeletal muscles, the muscles of respiration and the heart. Each year, an estimated 20,000 children worldwide are born with DMD. To date, there is no cure. While one in every 3,500 males will be affected, it is not strictly hereditary – more than 35% of all cases are spontaneous, meaning that we cannot predict which family will be affected next.

Because of the generosity of the Cowboys Community Foundation, boys and youths with Duchenne in Far North Queensland will be able to participate in similar outdoor activities to their peers by fully enjoying Australian beach culture. Parent Project is the only national Duchenne-specific charity in Australia and is a member of the international association, United Parent Projects Muscular Dystrophy.

www.parentproject.org.au