Felix’s Story

The Robles family’s journey has been deeply shaped by a rare genetic condition called PTEN Hamartoma Tumor Syndrome (PHTS), often referred to as PTEN disorder. Both Felix and his brother have both been diagnosed with this disorder.

PTEN disorder is caused by a mutation in the PTEN gene, which is responsible for regulating cell growth. When this gene doesn’t work properly, it can cause cells to grow and divide uncontrollably — leading to an increased risk for certain cancers, as well as developmental and neurological challenges, including autism spectrum disorder.

Because of this condition, both boys are nonverbal autistic and face significant developmental delays. Right now, they are undergoing intensive cancer workups and ongoing monitoring, since PTEN mutations can affect multiple organs and raise the risk of tumors. It’s an incredibly overwhelming process — balancing medical appointments, therapies, and the daily challenges of raising children with special needs — but the Robles are doing everything they can to give them the best care and the best chance for a healthy future. At this time, Felix’s bloodwork still shows that he remains clear of any cancer or other organ issues.

Mirah, Felix’s mom, shared that one of the hardest parts of this journey is that most people have never heard of PTEN disorder. Awareness is so low that many families go years without answers. The Robles want to share their story because they want others to know that this condition exists, that genetic testing can save lives, and that children like Felix and his brother deserve understanding, research, and resources to help them thrive.