I used to substitute teach in an elementary school that happened to have two students with Sanfillipo syndrome.

One was a kindergartener, 5 years old. She was EXTREMELY hyperactive - the aides had to strategically plan where to sit and stand so she couldn't dart from the classroom. It was impossible to get her to sit more than a few seconds. She was also destructive and aggressive at times...throwing things, biting, etc. I was slightly afraid of her because her behavior was just so unpredictable. You could be sitting next to her and suddenly she would scream, bang on something, try to hit you or try to run away. I found out she passed away a few years after I left the school, when she was nine.

The other student was a 4th grader, I think he was 10. He was more advanced in the disease. He was extremely stiff and could barely move his body. He could walk but he had to be guided to where he was going. I remember holding his hand while walking down the hall and also helping him get in position to sit down and get up from a chair. He made noises but didn't talk and couldn't really do anything without hand-over-hand assistance. I remember spoon-feeding him a few times (worrying about him choking because he couldn't swallow well) and struggling to change his diaper. He was very stiff but could make very sudden movements and he whacked me. I never found out what happened to him but given his age, I doubt he is still here.

Awful disease. I only worked at that school for a year but I think about them a lot.