Learning to adjust

“FOP has changed my life perspective. I was a workaholic before my son was diagnosed. It helped me realize what I need to do to fully appreciate life. I now try to take one day at a time, and I spend as much time as possible with my loved ones.”

Though Gerald de Leon worries about his son, Miles, who was diagnosed with FOP shortly before turning 2, he wants to make sure he has room to grow, experiment and live independently.

He describes Miles as “quite a ham.” He said Miles loves to joke and make his 6-year-old sister laugh, and every time he sees a camera, he strikes a pose.

Gerald said, smiling, “In all our family photos, Miles has this huge, cheesy grin plastered across his face.”

The de Leon family lives in Milpitas, California, and enjoys sightseeing and exploring around the Bay area in their free time.

Miles loves going to the park, and though Gerald wants him to be cautious, he also want Miles to be able to enjoy just being a kid. He wants Miles to look back on his childhood with fond memories.

Gerald said, “Miles doesn’t yet understand what he has, or what his limitations are. He has some range of mobility issues, but he’s already learning how to adjust. I’m thankful that he’s learning to adapt to his situation without even realizing it.

“Being a part of this community really helps. When I’ve had the opportunity to hear leading FOP experts speak, I’ve felt hopeful. It’s amazing to see how many ways there are to spread awareness. We’re in a new era.”