Children constantly amaze us with their coping skills in often tricky situations, but some have to endure things we can’t even begin to comprehend. Eleven-year-old Billy Kiely suffers from a rare progressive disease called Hunter’s Syndrome, which causes painful joints, heart problems, enlarged liver and spleen, development delay and speech problems. Billy is also almost completely deaf and suffers painful carpal tunnel in his hands. Yet despite all he has had to go through in his life so far, Billy always has a smile on his face and a genuine joy for life.
“Billy is my superhero and the bravest boy I know, his proud mum Christine Shanahan told us. “I may be a little biased as I’m his mum but everyone who knows Billy is blown away by his courage, his constant smile and infectious laugh. Even though every day is a battle for him he never lets the pain get to him and always manages to put a smile on everyone’s face.”
Every week, Billy has to go through a four-hour treatment to try to slow down the progression of the disease, as well as numerous other appointments and procedures, including physio and occupational therapy. He also suffers a lot from joint stiffness and respiratory infections. “Despite all the medical appointments, Billy never gets down and loves nothing better than going to school to be with his friends and just be a normal kid. As parents we just strive to keep him as happy and healthy as he can possibly be. Billy never gives up and always has a smile on his face so we must do that too.”
As Billy gets older, dealing with the disease gets trickier as it is progressive and therefore raises more challenges as the years go on; however, Christine is hopeful that advances will be made. “Billy is on ERT (enzyme replacement treatment) at the moment and his condition is relatively stable. We hope to maintain this for as long as possible, but ERT only slows down progression unfortunately. However, a lot of advances have been made in clinical trials so we are always hopeful for the future.”
Christine is thrilled that Billy is getting this award and that his courage and bravery is being recognised. “I have the most rewarding job in the world cause I am mum to a superhero. Billy loves Superman, Spiderman and all the superheroes, but to us he is the most amazing superhero of all.”