We are the Smith Family and my Wife, Dominique, and I have 2 amazing children who has Batten Disease (CLN2). Our Son, Silas, had his first seizure a little after his 3rd birthday of August 2022 and was diagnosed in April 2023. At that time, we were expecting our daughter, Scarlett, and decided to test her when she was born in October 2023. She was diagnosed in November 2023. Silas has been receiving infusions every two week since July 2023, and Scarlett will be receiving the infusions with Silas starting March 2025. Silas is a loving, caring, sweet boy who loves playing with dinosaurs, monster trucks and trains. Scarlett loves doing things with her big brother, dancing, and being wild. Despite all the doctor appointments, traveling, and infusions, Silas never let his spirits down. He is always happy and loving.
We have to travel 3-4 hours each way to Children’s National in DC for the infusions and/or medical appointments. We are so grateful that we are able to stay at the Ronald McDonald House the night prior.
We chose to have donations go to Family Support because it will help a lot for any family with Batten Disease whenever there are unexpected medical expenses, travel emergencies, medical equipment, etc.
