When he was nine, Joshua came home with a sore leg. His parents thought he’d strained a muscle, but when the pain worsened, they began a long journey of appointments and tests in their home province of Newfoundland, trying to figure out what was wrong. Unfortunately, countless specialists were unable to offer a reason for the mystery pain. Meanwhile, Josh’s condition deteriorated quickly. He could no longer walk – he was reliant on crutches or a wheelchair to get around. The pain was so horrific that he eventually became bed-ridden and unable to go to school. He grew increasingly sad and frustrated and his parents, Lori and Kris, felt helpless. The entire family was drowning in hopelessness and worry for Josh’s future.
Then, finally, a diagnosis: Scleroderma – a rare disease that causes skin and connective tissue to tighten, causing agonizing pain. Josh began a drug that was able to prevent the disease from spreading, however the pain in his leg could not be reversed. Lori and Kris wondered if Josh would ever walk again. Fortunately, they met an anesthesiologist who had worked a stint at the Alberta Children’s Hospital across the country in Calgary. The doctor told them about an incredible program for kids with chronic pain called the Intensive Pain and Rehabilitation Program (IPRP). That was all they needed to hear – they were desperate for some relief for Josh. They packed up and headed to Calgary for the three-week program.
In IPRP, Josh went through physio, occupational, art and recreation therapy as well as individual and family therapy with a psychologist and worked with nurses and an anesthesiologist every day. He and his parents learned that the pain might never go away, but Josh could learn coping mechanisms to control it and still have a great quality of life. Though it was hard work, Josh was excited to go every day and Lori says she started noticing changes in both his physical abilities and outlook and motivation almost immediately. It was a life-changing experience for the entire family.
Today, though Josh still lives with pain, he knows how to manage it. He is walking around and Lori confesses she doesn’t even know where his crutches ended up. He’s back at school, he’s playing basketball and even broke his arm while riding his bike last summer, which Lori and Kris see as a blessing, since at one point he couldn’t get on his bike. They are so grateful to the IPRP team at the Alberta Children’s Hospital for giving them their son back.
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