Crew’s journey with Nemours Children’s Health began when he was just 9 months old. After being hospitalized for a seizure, his family met Dr. Sheth, a neurologist at Nemours Children’s Health, Jacksonville. “Dr. Sheth listened to everything I told him and watched videos I had captured of Crew’s seizures,” his mom recalled. “He instantly requested genetic testing, which gave us his diagnosis of Dravet syndrome.” Dr. Sheth’s quick thinking made all the difference. “It was so critical because there are many anti-seizure drugs that can worsen seizures in children with Dravet syndrome. Because it is a rare syndrome, many children get diagnosed later in life, but we are so very thankful that the Nemours Children’s team was able to give us an early diagnosis so we could treat it appropriately.”
Before finding the right treatment, life for Crew’s family was filled with uncertainty and fear. “Crew was seizing almost weekly, and we struggled to find the triggers,” his mom shared. “This greatly impacted our quality of life as we were scared to leave the house or do anything we thought may trigger another seizure. We were living in constant fear and terrified that we would lose Crew to a seizure.”
Their journey with Nemours Children’s began during a hospital stay at Wolfson Children’s Hospital in downtown Jacksonville. “Due to Crew’s seizures, he was seen by Nemours Children’s neurology in the hospital. We were so impressed with the care we received; we decided to continue with Nemours Children’s after our hospital stay.” Since then, Crew’s care has been supported by an incredible team, including Dr. Sheth, Dr. Galan, Dr. Burkhalter, Dr. Rappoport, Dr. McCaslin, and Dr. McCoy. “We have had nothing but great experiences with all the doctors, nurses, and staff at Nemours Children’s. The doctors truly care about their patients and listen to the parents’ needs and concerns. Every doctor we have seen has been empathetic, compassionate, and just wonderful with Crew. These doctors and nurses go above and beyond for their patients.”
Today, 5-year-old Crew is thriving thanks to ongoing therapies and medications, including Fintepla, “a game changer for Crew.” His family remains hopeful. “We are forever grateful for the continuous care we receive from Nemours Children’s. We feel confident that Crew is receiving the best care possible.”
Looking ahead, Crew’s parents focus on gratitude and joy. “Our plan for the future is to take one day at a time and continue to enjoy life with Crew as we embrace the little things, the small daily wins. We will continue to spread awareness about Dravet syndrome and raise money for research. We are hopeful there will one day be a cure for Dravet syndrome, but in the meantime, we know Crew is in the best hands for his medical care.” Their advice to other parents is simple yet powerful: “Keep fighting, never give up. Try new medications and therapies, support research, and spread awareness. Take care of yourself because being a full-time caregiver is hard. Embrace the little things, celebrate the small wins, and look for joy in everything but know it is okay to grieve a life you thought you’d have too.”
