Age: 8
Sebastian's Family
Davie, FL

Sebastian's Story

The Estevez’s just wanted to give their son Sebastian the ability to grow and choose his path in life. Like other families, they noticed some health issues affecting Sebastian. After their own research led them to meet with a geneticist, they were devastated when they received the diagnosis, their son had Hunter syndrome. “I enjoy the present but in the back of my mind, he will lose that”. Jenn and Mario Estevez are not alone in this thought. Gene therapy is the hope in all of this, and money should not be what stops saving these boys. The support of others is what will help these boys live fuller lives.

Sebastian and his mom and friend
Sebastian smiling at Chipotle
Sebastian and friend playing baseball
Sebastian smiling
Sebastian and family
Sebastian smiling

October 26, 2024

WonderFall Family Festival

Project Alive and The Hunter Syndrome Foundation are teaming up to host the WonderFall Family Festival on October 26, 2024 at the Rough Rider's Stadium in Frisco, TX! This fall festival will be an inclusive, family friendly event to raise awareness about Hunter syndrome and support the work being done in research, advocacy, and community support by Project Alive.