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Brittle Bones, Unbreakable Spirit

Despite requiring a needle every time he visits, James’s face lights up with joy whenever someone mentions McMaster Children’s Hospital.

One day after his birth, James was transferred to McMaster Children’s Hospital because his local hospital did not have the resources to manage his special feeding needs due to his cleft palate. James spent one week in the Neonatal Intensive Care Unit and his palate was repaired when he was just shy of one-year-old. Nevertheless, James would continue to visit the hospital regularly for a different condition that cannot be cured.

James has a congenital disorder called Osteogenesis Imperfecta (OI), commonly referred to as “brittle bone disease.” The condition prevents the production of adequate collagen, an essential protein that constructs and supports organs and tissues. Due to a lack of sufficient collagen, James’s bones are fragile and vulnerable to fractures. He had a 50 per cent chance of inheriting OI from his mother, who also suffers from this condition.

“When James was born, his legs were bowed and the whites of his eyes were blue, which are common signs of OI,” says Tanya, James’s mother.

James has broken his right leg twice and left leg once. His bones are so fragile that he broke one of his legs while simply sitting in his playpen.

Under the care of Drs. Sarah Burrow and Karen McAssey, James is regularly treated at the 3D Medical Day Care Clinic. In an attempt to strengthen his bones, he visits the Hospital every four months for pamidronate injections. The three-day long process draws calcium from his blood and infuses it into his bones. He is expected to undergo this procedure for the next three to five years. By the end of 2015, James will undergo a bone density test to determine how successful the injections have been thus far.

“James knows that he will feel some pain during the pamidronate treatment,” Tanya says. “Even though the process can be unpleasant at times, James still loves going here, and I think that speaks volumes about McMaster Children’s Hospital and its staff if a child is excited about going to the hospital.”

Though OI is not a life-threatening condition, James will have to deal with unanticipated fractures for the rest of his life. However, this does not prevent him from enjoying his favourite pastimes, such as ice-skating and jumping on his trampoline. His parents are cautious about certain activities, but the ankle-foot orthotics he receives from orthotist Pat Reilly through the Prosthetics and Orthotics Service help prevent leg fractures and enable him to participate in many physical endeavors.

Now residing in St. Catharines, the family truly appreciates the care that James receives at McMaster Children’s Hospital. In fact, his parents were so inspired and motivated that they initiated their own fundraising efforts to support the programs that have helped James.

“A lot of people don’t realize that the government doesn’t fund the equipment,” Tanya explains. “It takes a village to raise a child, and everyone needs to do their part to help support the equipment and services that help the children in the region.”





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