Meet Sebastian: 2022 Family Advocacy Day Champion

Sebastian is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Sebastian and his family will discuss his health journey, Nemours Children's Hospital, Florida’s role in providing him with necessary health care services, and why the public and our elected officials must invest in the future of patients like Sebastian.

On Mother’s Day 2020, Sebastian and his parents went to the ER at Nemours Children’s Hospital, Florida. However, due to visiting limitations because of COVID-19, only one parent was allowed to stay. After a CAT scan, the attending physician discovered a brain tumor and Sebastian was immediately admitted to the PICU.

“The diagnosis had a huge impact on our family,” says Liz, Sebastian’s mother. “I was 30 weeks pregnant, and his siblings were devastated to not see their brother for five weeks. His dad had to take time off work to care for Sebastian.”

Sebastian quickly had brain surgery and he was in the PICU for three weeks, then received inpatient rehabilitation for two weeks. He continued with proton radiation therapy in June of 2020 while doing  weekly eight-hour outpatient rehabilitation for over three months. He completed his last round of chemotherapy in September of 2021.

Following his latest MRI in April of 2022, he’s now cancer free. He does have low vision/blindness from the hydrocephalus caused by the brain tumor.

“We are so grateful that he is cancer free now,” says Liz. “Nemours saved Sebby’s life and continue to offer physical, spiritual, and emotional support. They are like family!”