Lilia Zaharieva Spirit Award in School of Child & Youth Care

It is with great sadness that we acknowledge the passing of Lilia who died on June 17, 2022, at the age of 35. Lilia was an extraordinary woman who took on many challenges on multiple fronts and she was an inspiration for all who knew her. She lived with cystic fibrosis (CF) and from a young age, Lilia was told she would not live much past the age of 30, the average life expectancy for persons with CF before the advent of the new miracle gene-altering drugs.

After studying philosophy for several years, she decided to enroll in the Bachelor’s program at the School of Child and Youth Care at the University of Victoria. As a former youth in care, Lilia was a passionate advocate for transforming our social care systems to be more fair, caring and just. Lilia possessed a deep intelligence and a curious mind, and she had an unwavering moral compass.

Lilia’s cystic fibrosis required close monitoring and treatment from an early age which included frequent hospital stays. In 2016, a new drug called Orkambi was made available for people with Lilia’s profile, and though very expensive (approximately $250,000 per year), it was covered under her university student association medical plan. However, soon after receiving Orkambi which improved her condition significantly, the student medical plan was changed in order to avoid higher premiums, and as a result, it ceased to cover the cost of Orkambi. Various media outlets picked up her story and many members of the public, as well as fellow CYC students, staff, and faculty, were very supportive of her plea to the government for this life-enhancing medication. The BC Minister of Health and his advisors did not consider the evidence of Orkambi’s efficacy to be compelling enough to warrant funding, and thus a fierce campaign, championed by Lilia, on behalf of all those desperately in need of this drug treatment was initiated.

In support of former youth in care at UVic, Lilia was the senior author on a report entitled: From a Ward to Award, and Beyond (2016), in which she outlined the various stages of entering, progressing through, and leaving post-secondary education, along with strategies at each stage for supporting youth with lived experience in care to succeed. A province-wide forum was held with post-secondary institutions, many of which have used this report to develop their own approaches and strategies to assist youth from care.

In everything that she did, Lilia drew on her powerful intellect, strong sense of justice, and her lived experience. She taught everyone who was privileged to know her about care, justice, integrity, collective action, friendship, and tenacity. We are grateful for the way she challenged all of us to be and do better.  Lilia will be deeply missed by so many, and she has left an indelible mark on the field of Child and Youth Care and beyond.