Henry
(Age 6)
Yukon
Henry is a bright, creative, and incredibly brave 8 year old. He’s always had the biggest imagination and loved exploring the world around him! From the time he began walking and talking, he faced challenges with balance and speech. We worked with physiotherapists and speech therapists for many years. Like any parent we did worry about him, but never too much because eventually he did learn the skills, it just took him a little longer.
Even so, it was a complete shock when he was diagnosed with Duchenne muscular dystrophy the day after his fourth birthday.
His diagnosis finally came after we were referred to BC Children’s Hospital for something completely unrelated. In many ways, it felt like fate. Since we live in a smaller city and it is a rare disease, we’re one of the few families here in Whitehorse that are affected by Duchenne. Without that referral, it may have taken years to uncover the cause, delaying the start of treatment.
Henry has a passion for travel and is quite the airplane expert, so he always looks forward to our trips to Vancouver to see his Neuromuscular Team. He enjoys playing video games, especially Minecraft, where he builds incredibly cool houses and airplanes. In the winter, you’ll find him tobogganing with his dad, and in the summer, he’s happiest heading out on family hikes. Most of all, he treasures time spent with family, especially his sister and cousins.
It may feel a little isolating sometimes, but we are far from alone. We’ve found incredible strength and support within the Duchenne community across Canada and around the world, as well as from our family and friends at home.