2 Years - Too Fast
September 12, 2025 — Wow! September is here, which means we are just one month away from celebrating Sam’s 2nd birthday! It’s hard to believe how quickly these two years have flown by. We’re often asked, “How is Sam doing?” The short answer is: he’s doing great. Sam is thriving as an (almost) two-year-old—he loves to “wing” (swing) outside, play with cars and balls, and be right in the middle of whatever activity you’re doing. He is strong-willed and determined (we’ll let you guess who he gets that from!) and he recently started 2K, where his skills are truly taking off. This past year he has gone from crawling to running full speed, and we couldn’t be more proud of the busy, curious little boy he is becoming.
On July 31st, we marked one full year of Brineura treatments. It’s hard to believe we’ve been traveling every other week for over a year now to ensure Sam receives the care he needs. We’re also often asked, “How do you know the treatments are working?” The truth is—there’s no definitive way to know. What we can say is that Sam has not experienced any regression in his skills, which is our greatest hope as he approaches the typical onset window (ages 2–4) for Late Infantile Batten Disease (CLN2). Brineura is not a cure, but it can slow the onset and progression of symptoms. Because Sam began treatments before showing symptoms, we are incredibly hopeful he will continue to thrive without signs of the disease. For us, that means the treatments are working—and that’s the most we can ask for.
Thank you. Over the last year and a half, we’ve navigated countless doctor’s appointments, hospital visits, specialists, treatments, and therapies. Through it all, your prayers, messages, and support of Hope for Sam have carried us. As parents of a child with special needs, having a community we can lean on means everything. You remind us that even when the journey feels heavy, we are not walking it alone. Thank you for continuing to stand with Sam and supporting our Fam Fund as we fight for a cure for CLN2. We are deeply grateful you are here.
Love,
The Stocktons
