Sanfilippo Syndrome is a genetic disorder seen in children who don't have an essential enzyme needed to break down long sugar chains. The disease goes undetected in children until sugars build up in their bodies around the age of two, after which symptoms appear in stages (noted below) and progress rapidly. Life expectancy varies from child to child, but generally children do not live past their early teens.
THERE ARE NO CURES FOR SANFILIPPO SYNDROME.
Stage 1: The child begins to:
- lag behind his peers in development
- display difficult behaviors related to a decrease in attention span
- become hyperactive
- develop hearing loss
- develop a decrease in understanding of language
- encounter frequent diarrhea, cold and congestion and ear infections
Stage 2: The child begins to:
- display extreme hyperactivity that inhibits normal functioning in all areas of development
- become very destructive and display aggressive actions due to hyperactivity
- develop an insatiable need to chew on everything and anything
- develop sleep problems and can even go for days at a time without sleep
- lose language skills which further compounds agitation for the child
- develop extreme safety concerns as motor functioning generally surpasses cognitive functioning
- lose any toilet training skills that may have been learned up until that time
Stage 3: The child begins to:
- slow down and issues associated with hyperactivity and destructive behaviors diminish
- become more and more unsteady on their feet and eventually become dependent for all mobility
- chewing and swallowing skills deteriorate which can result in the child needing a feeding tube