CRUSH YOUR GOALS

Sanfilippo Syndrome, also known as Mucopolysaccharidosis type III (MPS III), is a rare neurodegenerative genetic disease. A child with Sanfilippo lacks a necessary lysosomal enzyme in their body which ordinarily breaks down heparan sulfate, a molecule within the cells that helps build various tissues. The accumulation of heparan sulfate over time causes permanent cellular damage. Affected children go through stages as the disease progresses. Developmental delays are typically noticed first. This is followed by extreme hyperactivity, aggression, mental decline, dementia, loss of language skills, loss of some or all hearing and vision, insomnia, seizures, difficulty swallowing, and the inability to walk. Most children pass away in their teens. Currently, there is no FDA-approved treatment or cure for Sanfilippo, which is fatal.

We are the Sink family (parents John and Kathy, Declan, and Zane) and reside in Dallas Texas. When Declan was 4 years old, a single phone call from a doctor changed our lives forever. Terminal. No cure. The devastation and grief engulfed us. A few months after his diagnosis, we found the Cure Sanfilippo Foundation and other families with children living with Sanfilippo. We found a community, support, and a mission.