Before age 2, Sadie could count to 10 Now she’s 9, and Sanfilippo has taken her abilityto recognize

Before age 2, Sadie could count to 10. Now she’s 9, and Sanfilippo has taken her ability to recognize and say her numbers. It has now taken away most of her speech when she once knew hundreds of words and spoke in complete sentences. This clip shows how she communicates and learns at school today. She uses an AAC device that can work through eye gaze or touch. Because of Sanfilippo, Sadie is hyperactive and struggles with fine motor skills, so both input methods are challenging for her. Her teacher calls out a number, and Sadie tries to find it. She gets it right a little over half the time. Similar-looking numbers (3 and 8, 1 and 7) are the toughest. Her attention span allows for about 10 minutes of focused work before she needs a break. The two people working with her here are Ms. Blevins (who just won Teacher of the Year!) and Ms. Crayton, her dedicated one-on-one. Their patience, consistency, and willingness to keep teaching her even as she loses skills is something we are deeply grateful for. Their work, alongside her therapists, is why Sadie still knows as much as she does. This is the reality of Sanfilippo. Kids lose abilities they once had. Communication becomes much harder. Learning shifts from gaining skills to holding on to what’s left. But our kids are still here and know so more than they can communicate. And this is why we need approved treatments ASAP. Kids will continue to lose their speech, memories, mobility, and ultimately their lives until we have approved treatments. #ApproveHopeNow #curesanfilippo #sanfilipposyndrome #aac #nonverbal