Sanfilippo Type A is a mucopolysaccharide storage disorder.The M-word means- they are long chains of sugar molecules used in the building of bones,cartilage,skin,tendons and many other tissues in the body.They form part of the structure of the body and also give the body some of the special features that makes it work. To understand this it is important to understand that in the normal life, there is a continuous process of building new muco. and breaking down old ones-a recycling process.This ongoing process is required to keep the body healthy.This requires enzymes. With Sanfilippo A,you are missing one of four specific enzymes that are essential in the breaking down process in order to keep the body healthy.The missing enzyme is heparan sulfate. 1 in 20,000 children are born with this gene.In most cases the mother and father both have to pass it along to the child,but in Zeke's case his fathers gene duplicated & made a carbon copy of itself, and gave Zeke both fragments for the gene. The Way The Disorder Works---- The first stage 1-3yrs. the child is normal with a few minor delays, that progress as age does. The Second Stage--(The Hard Stage)the child starts to lose everything he has learned,restlessness (Zeke at times could go 24-36 hours without sleep)they become more aggressive, throw, bite, hit.It was like having a 1yr olds mind in a 7 yr. old body. The Third Stage--the child will regress until he is as he was inside the womb,until they lose the ability to even swollow their own drool.Then they will suffer usually from asperration and go to heaven.