Doctors can do nothing to stop the regression and little for the symptoms.
Life expectancy for children with Sanfilippo is between 10 and 15 years. After talking with doctors and scientists throughout the world, the Wilsons found just one researcher working with their daughter's disease. The researcher was confident in her research but could not say when a cure would be found. Thus, it became urgent to the Foundation's Board to ensure that adequate funding reached interested researchers as soon as possible. No public fundraising organizations are used by the Foundation in order to minimize expenses and maximize the funds available to give to medical researchers.