Elliott’s journey with Nemours Children’s Health began when he was just 2 years old. On May 30, 2024, his family received the life-changing diagnosis of CLN2 disease. “We found out from genetic testing on May 30, 2024 I believe,” said his dad, Nathan. “I was assuming the school was under-feeding my son. I was upset at everyone until I figured out what was causing seizures.”
At first, Elliott received his infusions at a different provider in Gainesville, Florida. Eventually, his care returned to Nemours Children’s when the hospital began offering Brineura®, the only FDA-approved treatment for CLN2. Nemours Children’s is the only pediatric hospital in Central Florida offering this life changing therapy. “People said to come here,” Nathan recalled. “The Nemours Children’s team has always been top notch. Very kind people here. Their teams seem to have much better resources and location for me. I’m forever indebted to the team. They were all very kind as well and very helpful. It just seems Nemours Children’s has the best kid-friendly environment to me.”
Under the care of Dr. Rohan Vaidya, Elliott is receiving Brineura closer to home. Dr. Vaidya recounts working with Elliot, “I would say it has been a long undertaking but we are so happy to be able to offer this treatment to Elliott. As the doctor who first diagnosed him, it was heartbreaking to tell the family they would have to drive hours each way to get this lifesaving treatment. For myself, Camille VanHoof, APRN, who is in charge of administering the medication, and all the other hospital staff who helped make this possible, it’s so rewarding to see Elliott doing so well.”
Through all the challenges, Nathan holds on to perspective and love for his son. “Never miss an appointment for infusion. And give the little man the best life we can. Just keep him as happy as possible. Despite the circumstances your kid wants to ignore their disabilities. You should try to help them in that effort.”
