Volunteer spotlight: Rafhaela (Ella) Vedia

Meet Rafhaela (Ella) Vedia. Ella's journey began with a rare form of primary immunodeficiency (PI) called severe combined immunodeficiency (SCID), specifically the Artemis deficiency type, which impacts her T cells, B cells, and NK cells – the heroes of her immune system.  

Within just a few months of her birth in 2005, Ella embarked on a challenging path. She underwent two rounds of conditioning chemotherapy and two bone marrow transplants (BMTs) donated by her sister. Since those early days, Ella has faced ongoing medical challenges stemming from her condition, as well as enduring the side effects of treatments and medications that were a part of her childhood. Her sensitivity to ionizing radiation has led to recurrent bone malformations, necessitating several surgeries to help her lead a more normal life.  Ella shares, “Through the Immune Deficiency Foundation (IDF), I learned that everyone has their own story to share; that’s what makes this community so beautiful. We all have that one common enemy, and though it all affects us differently, we are able to find common struggles and experiences with each other, which makes us closer as a community.”  

Sadly, there's still a lot we don't know about the long-term outcomes for patients like Ella after undergoing chemotherapy and BMTs, highlighting the need for more research in this area.  Adding to the complexity of Ella's condition, not all the necessary procedures were covered by insurance. Access to specialized healthcare has been one of the most significant hurdles her family has had to overcome.  

Determined to transform her medical challenges into a force for good, Ella became a volunteer for IDF. Ella's mission is to share her story with a global audience, in the hopes of making a profound impact on others facing similar struggles.  

“For me, volunteering makes me so happy. I love knowing I’m making a difference, especially when it benefits our community.”  

In April 2023, Ella joined IDF Advocacy Day in Washington, D.C. There, she had the privilege of directly engaging with Congresspeople and their staffers, along with several other Senators. Throughout the day she advocated for how individuals with primary immunodeficiencies, like herself, deserve access to all necessary medical treatments and medications to not only survive but also improve their quality of life.  

“I’ve been telling my story and advocating my whole life to doctors and kids at school. To have the opportunity to share my story with individuals holding an office who have the chance of making a difference and educating them on what’s going on within our community is an opportunity that is very important to me and others who are struggling. This is, for sure, our chance to get their attention, educate them, and even dazzle them,” explains Ella.  

Ella's journey as an advocate is far from over. She aspires to continue championing the rights and well-being of people with PI by pushing for changes in the law and society.  If Ella’s story inspires you and you are interested in becoming a volunteer, please contact us at  volunteer@primaryimmune.org or call 410-321-6647.