“There’s a phoenix in each of us, ready to rise.”
Photographer: Alex MacAulay, Halifax NS
Ashley Hickey’s life took a challenging turn during her childhood when she was diagnosed with a type of Primary
Immunodeficiency called Common Variable Immunodeficiency (CVID). It’s also known as hypogammaglobulinemia, a group of disorders that do not make sufficient antibodies to fight bacterial and viral infections. This diagnosis, along with the later identified celiac disease, made her childhood an enduring struggle. The cruel stigma and unkindness of bullies who failed to comprehend the depths of her rare condition made her childhood years far from normal, with frequent sickness compounding these challenges.
In her adult life, living with a rare disease brought forth its unique set of obstacles. Her 14-hour infusions required her to miss 14 days of work a year, which could not be accommodated by any of her employers. Despite these hardships, Ashley refused to let this rare disease define her – both professionally and personally. She harnessed her determination and began to forge a unique path. Her passion for technology led her to venture into the world of entrepreneurship. Being her own boss meant that she now had the power to take a sick day whenever her body needed it.
Throughout her journey, Ashley demonstrated unwavering resilience and determination. She chose to share her story to shed light on the stigma and bullying that can accompany rare diseases, and the isolation and fear experienced by others in her situation. Despite the adversities she faced, Ashley found a way to embrace her condition, channel her passions for work and dress-designing, and infusing beauty and purpose into her life.
Ashley’s story serves as an inspiration, reminding us that even in the darkest days, one can find the strength to navigate the challenges of living with a rare disease, and discover the light at the end of the tunnel.
Ashley Hickey is the 1 in 12 Canadians impacted by a rare disease.
Watch Ashley’s interview with Global News here: