Gavin’s Jedi: One family’s way of making sense of XLA

At the age of 3-years-old, Gavin Angelos, was diagnosed with X-linked Agammaglobulinemia (XLA). After receiving his diagnosis, the Angelos family wasn’t sure how to move forward in life, especially after they realized that none of their friends, peers, or family could relate to or even understand the primary immunodeficiency disease (PI).

This made his mother, Stephanie, think about how their family would carry on and how she herself would explain this diagnosis to others and her own children. One day in the car, she decided that she would simplify the diagnosis and turn it into something everyone can understand. She decided to relate her son’s illness to Star Wars. She proceeded to tell her children that everyone is born with Jedi to fight off Stormtroopers that might go into their bodies and make them sick. Except, Gavin was born without Jedi, so every week he will need an infusion of Jedi so he can fight off the Stormtroopers.

Stephanie states, “We now call Gavin’s infusions his ‘Jedi’ and it single-handedly made something that could be scary and painful into positivity and strength.”

Since then, Gavin receives weekly subcutaneous infusions of immunoglobulin and a bi-weekly shot of Humira that are both vital to having him be out in the world like any other kid; even when he might not feel great. Gavin, now 8-years-old, asks all the time how much longer the scientists will take to figure out how to replace his Jedi. Gavin and his family truly think that sometime in his lifetime they will see a cure, but for now, they know they need to raise funds and awareness for a disease that most people have never even heard of.