Meet Jaxon, an energetic, ice-cream loving four-year-old who lives with cystinosis. When he was six months old, Jaxon’s appetite decreased significantly. He started to vomit, lose weight, and failed to thrive. The cause was ultimately determined to be cystinosis. Feeling scared and alone after learning of their son’s devastating diagnosis, parents Chelsea and Brian immediately turned to the difficult task of facing cystinosis head on.

Together they made the decision that Jaxon would live with cystinosis but it would not define him. Despite the unpredictability of Jaxon’s daily nausea, vomiting, fatigue, and excessive thirst, and a strict around-the-clock medication schedule that often disrupts his play time, Chelsea and Brian work hard to make the most of each day. Drawing strength from each other, their families and the cystinosis community, Chelsea and Brian focus on helping Jaxon grow up with the confidence, knowledge and skills he’ll need to take care of himself in the future.

Watch the videos below to hear parent advocates Chelsea and Brian share their perspectives on Jaxon’s diagnosis, daily life with cystinosis and their hopes for the future.