Felix Antonio "Tony" R.
Nevada
9 Years Old
Diagnosis: PTEN Disorder
Theme - Lion King
Due Date: February 15, 2026
From the time Felix Antonio (Tony) was a baby, we noticed little things that set him apart — delays in his speech, slower motor development, and frequent visits to doctors trying to understand why he wasn’t meeting milestones like other children his age. As he grew older, Tony faced challenges with coordination, learning, and emotional regulation. We went through years of testing, specialist appointments, and unanswered questions. It was a confusing and emotional time for our family as we tried to find out what was behind his developmental struggles.
After countless evaluations, we finally received a diagnosis that explained everything: PTEN Hamartoma Tumor Syndrome (PHTS). PTEN is a rare genetic condition caused by mutations in the PTEN gene, which affects cell growth and development. The diagnosis brought both relief and fear — relief that we finally had answers, but fear because of the long-term health risks, including a higher chance of developing certain tumors and cancers. With this knowledge, we began managing Tony’s condition with regular screenings, therapies, and educational support to help him live his best possible life.
When Tony was diagnosed, our doctors recommended that our other children also be tested. That’s when we learned that his younger brother, Ezequiel (Zeke), also carries the PTEN mutation. Though each child experiences it differently, they both face developmental challenges and require ongoing medical care and therapy. Despite everything, Tony and Zeke are bright, loving, and full of personality. Their journey with PTEN has been difficult, but it has also taught our family strength, patience, and the power of hope. We continue to raise awareness and advocate for more research and funding so that children like Tony and Zeke can have brighter, healthier futures.Tony's Journey
