Jessica Marks-Cullum

My daughter Brinley was diagnosed with severe pulmonary arterial Hypertension caused by the BMPR2+ gene mutation just weeks before her 15th birthday after collapsing in gym class. Brinley has been surrounded with love and support by her family, her best friend, the PH community and especially by her Dad and I.  Brinley is under the fantastic care of the pediatric team at The Stollery Children's Hospital in Edmonton and will be transitioning to adult care this year. Although Brinley's diagnosis was very difficult to hear, our family has worked hard to "collect the wins," which has helped us all remain positive even on the most challenging days. Brinley has handled her journey with strength, grace and maturity and is determined to change the world and make a difference. 

Before Brinley's diagnosis, I worked in healthcare and had been familiar with PH in adults; however, hearing the diagnosis about my daughter was paralyzing. Now I may not wear scrubs anymore, but my passion for patient advocacy is still there. PH is a rare and invisible disease, and I feel it is my responsibility to PHight for all PH patients, to Phight for all patients' access to new medications in Canada, and to support fundraising efforts that further research. I also feel it is my responsibility to help represent HA Canada, and I am proud as our journey has been much brighter because of PHA Canada.