PI and SCID were acronyms that held little meaning for me until I began a story catching project with CIPO, a national non-profit offering education, support and advocacy for patients suffering from immunodeficiency.
The challenge: How to safely film patients with a compromised immune system, especially during the Coronavirus pandemic. The solution: Filming remotely over Zoom while reducing my carbon footprint.
Two of the stories captured were of newborns that arrived without an immune system, diagnosed with SCID. Their mothers shared the heart wrenching journey towards wellness after long awaited bone marrow transplants. Without early diagnosis and treatment, SCID infants often do not reach their second birthday and currently only a few provinces in Canada conduct newborn screening.
While the stories I captured were unique, the common threads woven throughout each were ones of prolonged and mysterious illness, frequent hospital visits, medical interventions, trepidation, and a lingering sense of isolation. Yet, their stories transformed as they spoke about their journey. From the fire, they emerged with deep wisdom, resilience, courage, empathy, and a zest for life. I was honoured to witness each journey, their stories inviting me to treasure the every day moments and to breath in gratitude.