Being Me – PIC3CA-Related Overgrowth Spectrum / PROS

When your child tells you through broken tears, “I just want to be a normal kid,” it can shatter your heart, but also open the path to a new road of support.

Children who grow up with facial deformities face a unique set of challenges to overcome. PIC3CA-Related Overgrowth Spectrum, or PROS, is a group of disorders that result in overgrowth of some tissues in the body. Diagnosed with this exceptionally rare genetic condition, fifteen-year-old Ellena shoulders the burden with an inspiring, hopeful optimism. Though she has faced bullies and strange looks, she always uses the opportunity to encourage other children to ask her any question they want, because she is ready with answers. Her mother says, “It’s a lot harder to bully someone when you know them.”  And Ellena’s open heart can turn anyone into a friend.

Decisions on how to approach the symptoms of PROS vary from family to family. And while Ellena’s family has made the choice to forgo treatment, another couple has decided to move forward with a novel treatment for their young son Adam, yielding great results.

This special episode of Medical Stories follows these two memorable families who are dealing with the challenges of PROS, and their different paths to approaching this rare condition. Watch their stories unfold in this episode of Medical Stories, PROS: Being Me.

Featuring renowned experts: Dr. Adrienne M. Hammill, Associate Professor, Department of Pediatrics at Cincinnati Children’s Hospital, and Dr. Matthew R. Greives, Thomas D. Cronin Chair of Plastic Surgery, Department of Surgery at McGovern Medical School at UTHealth Houston