As Normal as Possible Coming to terms with the medical consequences of Sanfilippo syndrome is toughest, says Steve. The hardest part is knowing your two children are going to pass away in your lifetime. You've got these tremendous battles to fight, just with your children and their health. The Moffs hope to give all of their children as normal a life as possible, including their healthy child Stefan. This is as much his reality as it is mine.
Baseball is a help.
Both boys love to watch and love to play. Hunter is in a league for kids with special needs. The family has also taken kayaking, hiking and skiing trips and spends several afternoons a week swimming. The children are encouraged to strive and take risks, the parents say. Sydney recently knocked out a tooth on a skiing trip.