Sanfilippo is most devastating to the brain.
Children experience hyperactivity, sleeplessness, loss of speech, loss of toileting skills, intellectual disability, heart problems, vision loss, seizures, loss of mobility, dementia, and finally death.
The disease progression can vary significantly from one child to the next, making it particularly difficult to predict. Symptoms cover a wide spectrum and some children may experience particular symptoms more than others. Some children may never experience certain symptoms.
One family’s experience with Sanfilippo Syndrome
This is the Jessop family’s story, sharing their oldest son Dylan’s journey with Sanfilippo Syndrome, particularly highlighting how the disease progressed over time.