Sanfilippo B Syndrome Moriah has Sanfilippo B Syndrome, a genetic defect that will make complex sugars build up in the cells of her brain and joints until they reach a toxic level. Most people's bodies use an enzyme to break down and excrete the sugars, but Moriah's body is missing that enzyme. The disease came from recessive genes in both parents that neither knew they had. Medical statistics say that one in 25,000 couples both have the problem gene, and their children have just a 25 percent chance of inheriting the illness. There is no cure.
Little research is done because it is so rare.
The lifespan for youngsters with Sanfilippo B can be 8 years, or 10, or maybe even 16. But the Holberts believe Moriah's illness is far along and fast moving. Art says her symptoms are similar to those in other children 8 and 9 years old. Wednesday, April 5, and Cindy was crushed. So began the journey that the Holberts will face together.