By Christina Kozakiewicz, Ingram School of Nursing
National Child Day falls on November 20 each year in Canada, to commemorate the United Nations’ Convention on the Rights of the Child, announced in 1991.
At McGill’s Ingram School of Nursing (ISoN), child health is a major area of focus for many of our faculty members and researchers. Among them, Dr. Argerie Tsimicalis, Assistant Professor, whose main area of interest is improving the quality of life of children living with Osteogenesis Imperfecta (OI)—a genetic bone disorder characterized by fragile bones that break easily, also known as “brittle bone disease”—and their families.
“To put it in perspective, I’d ask any parent if they could imagine a diaper change resulting in a fractured bone,” says Argerie. “This is the reality for children with OI and their families, and we wanted to offer others forms of support beyond their much-needed orthopedic, surgical and pharmaceutical interventions to make a difference in quality of life,” she says.
Argerie and her research team’s approach to OI research is collaborative, interprofessional and global in scope, and seeks to provide children, families and clinicians with an active role in co-designing and creating meaningful tools to improve their quality of life. Specifically, Argerie’s work has translated into the development of four programs, each providing inspiring messages to help children with OI and their families ‘bounce back’, foster resilience, and showcase the remarkable talents of the OI community to the world.
Among these programs, the creation of the fiction novel “The Dream Machine,”—developed by freelance writer Amarante in partnership with Argerie and the OI community—tells the story of Ashling, a 16-year-old with OI, who helps her younger sister, Skylar, a ski-racing star, cope with her first fracture.
“Sisom OI” (“SISOM” is a Norwegian acronym derived from the saying “Si det som det er” meaning “Say it like it is”) is an award winning, rigorously tested, interactive computerized tool that helps children with cancer express their symptoms to adults. Argerie and direct-entry master’s student Maia Siedlikowski are co-designing and creating Sisom OI with Norwegian partner and inventor Ruland, with the goal of offering children with OI a way to actively engage in their health care.
Argerie’s research team is also developing a program for youth with OI, targeting the need for educational, self-management and social support components. She is also working towards launching a spring art exhibit to showcase children’s experiences with OI. This project is currently in progress in collaboration with VOICE—led by ISoN professor Franco Carnevale— and IPLAI —co-led by Eric Lewis and Sheetal Lodhia.
“There is a vibrant and resilient OI community across the globe,” says Argerie. “We will continue to work towards better health outcomes for these children and their families, so that they have tools to help them live as well as possible.”
Alongside her role as Assistant Professor at the ISoN, Argerie holds a scientific appointment at Shriners Hospitals for Children®-Canada (SHC-Canada); a not-for-profit pediatric orthopedic hospital internationally acclaimed for establishing the worldwide standard of care for OI, pioneering the treatment, and testing its effectiveness. Argerie holds the first nursing scientific appointment within the 22-hospital network, which is generously supported with funds from the Newton Foundation, Tunis Shriners and Scotiabank®.
November 20, 2017