It’s amazing how a short video can transport you to a different time. This was filmed three years ago when Sadie was five years old. She was still in a clinical trial, getting infusions of the enzyme she’s missing. And Sadie was doing so well. She was smart, silly, and sassy. She was engaged and understood a lot. Since the trial ended, we’ve had to watch Sanfilippo Syndrome steal so much from our baby. It’s harder to engage Sadie. She’s lost most of her speech. We now feed Sadie to ensure she doesn’t choke on food. There are treatments proven to work for Sanfilippo. But we need the FDA to use the accelerated approval pathway NOW to ensure more children don’t lose their skills, and eventually their lives. Sadie, we have seen your life, and it matters. It is making a difference for many other children with Sanfilippo. I’m sorry we couldn’t fix the system fast enough to stop Sanfilippo from stealing many abilities from you. You deserve so much better. #sanfilipposyndrome #curesanfilippo #childhooddementia #foodanddrugadministration #fda #savingsadierae #CapCut

Ice cream and Sadie giggles make the world go ‘round! It’s clear Sadie still loves ice cream!🍦 🤭

Sweet memories. Daddy getting home from work has always been one of Sadie’s favorite times. She can no longer verbalize her excitement but her face sure shows it. #onthisday #sanfilipposyndrome #childhooddementia #daddysgirl

Even the kitties love Sadie’s rough love. #sanfilipposyndrome #childhooddementia #animallover #CapCut