For a lot of people, even the idea of getting up at 5.30 in the morning is rather draining. For Ethan Elder-Bickers, however, an 11-year-old boy from Hamilton, it’s become a way of life for two mornings each week.
What makes Ethan’s story even more impressive is that before he does this, Ethan has to put metal splints on his legs to help them work. This is something that he does every morning because Ethan has Muscular Dystrophy.
It was just over a year ago when Ethan first started showing signs of muscle weakness: “He was struggling to get off the floor without help,” his mother, Nikki, recalls. After a lengthy process of testing (some of which they are still awaiting results) and further deterioration, Ethan finally received his initial diagnosis about six months ago. Two months later he was fitted with splints for his lower legs.
“Every day is a different challenge,” Nikki says. “He no longer walks as far as he used to. He finds it hard to do things that you and I take for granted; opening a water bottle, carrying a cup with one hand, climbing stairs, getting in and out of a car, pushing or pulling some doors, anything that requires strength. His mind is an 11-year-old boy, but his body is not. He gets very frustrated, very fatigued and, as you know, when you are fatigued, everything is harder.”
While this would be unimaginably tough for anyone, Ethan has refused to let it get the best of him. This is why you’ll find Ethan training at the YMCA Hamilton Fitness Centre four times a week, two of which are the reason for those early starts.
This all came about because Nikki is a member and asked Graeme, the Hamilton Centre Manager, if Ethan could come to Zumba to help with his movement, and a group fitness class called Muscle Sculpt. After meeting Ethan and hearing his story, Graeme decided that Ethan, who, he says, is a “sweet kid”, would be gifted a full membership. Ethan is one of four young men with scholarships at the YMCA Hamilton Centre, all of whom inspired Graeme to embrace YMCA’s philosophy of reaching out to those in need of help.
One of the trainers at the Hamilton Centre, Rachel, gives up her own time to personally train Ethan, helping him to maintain his programmes. His workouts are all low impact; small weights, biking, stretching and rowing. They focus on keeping his muscles flexible and functioning as well as they can. “It keeps him moving,” Nikki says. “Keeps him out of the wheelchair for now”.
While Ethan enjoys all of his training, Nikki says that his favourite is probably the rowing. “He and one of the staff and some other members have a challenge going on. They race each other and the one with the most metres after 90 seconds gets a Kit Kat bar.”
What really stands out for Ethan, however, is the YMCA community; “If you were to ask Ethan his favourite time, I think weekends and evening are the best, as there are more people and his favourite staff are on.”
The people at the YMCA are an important part of his experience, and it is obvious why this is the case; “All the staff that Ethan deals with have taken the time to get to know him, and encourage him to try his best,” Nikki says. “Some days he struggles with his workout, and I have seen staff and other members encourage him to keep working”.
Ethan clearly also inspires and strengthens the community around him; “I have been told by members that seeing Ethan trying so hard makes them want to work harder. So I guess it works both ways; he encourages them and they encourage him,” adds Nikki.
The staff have gone above and beyond for Ethan, and this is especially true of Graeme. “I can’t put into words how much Graeme has done for Ethan,” Nikki says. He recently arranged for Ethan to go up in the Westpac Rescue Helicopter, which the youngster dreams of one day piloting. Ethan is, apparently, still raving about it. “Ethan made Graeme go up too,” Nikki recalls. “I found out later that Graeme is afraid of heights.”
It is easy to understand why Nikki is so appreciative for all the ways in which YMCA helps Ethan. There is a lot of uncertainty in their world otherwise. The exact type of Muscular Dystrophy Ethan has is still yet to be confirmed, and this information is needed to inform his treatment – if there is any available – and his long-term prognosis. Nikki says that this makes the process even harder: “Without a diagnosis we can’t get any funding or support, and feel we can’t more forward.”
Without the YMCA, life could be very different for Ethan. His time at the centre empowers him, giving him the strength to fight back against the adversity he is facing, get on with his life, and, perhaps most importantly, continue to be inspired.