Jovani Sanchez is like many 13-year-olds; he enjoys hanging out at the beach, going on hikes and designing video games. But unlike most kids his age, Joey has spent what feels like a lifetime fighting to get to this moment. Joey’s family shares his journey battling OMS.

“In 2008, Joey’s onset started at the age of two-and-a-half. Within 48 hours, the happy and healthy child lost his ability to walk, talk, feed himself and hold his head up. His eyes darted back and forth non-stop, and as the hours passed, new symptoms appeared.

For more than two years, we sought help, visiting specialists in five states, but none of them had an explanation for Joey’s symptoms. In 2011, we traveled to Illinois to see a world-renowned Opsoclonus Myoclonus Syndrome Specialist. The doctor finally diagnosed Joey with OMS and prescribed treatments that included chemotherapy, high dose steroids, and immunotherapy treatments.

As you can imagine, it took a lot of hard work to get through those treatments, but today it’s all worth it. At 13, Joey is celebrating seven years in remission. He’s excelling in school and thriving. Some of Joey’s favorite places to visit are the beaches in Hawaii. It’s a peaceful place to relax, reflect and remember, although OMS will always be part of Joey’s story, it will never define him.”

At Pirouline, we value hard work and dedication to family. That’s why we’ve made it our mission to support the OMS Life Foundation. The foundation was created to raise awareness about OMS, maintain a support network for caregivers, and fund research for a cure. It’s important for us to help support the young warriors and their families battling this rare disorder.