How a Mom, a Scientist, and NICHD Joined to Fight a Rare Disease
Rett syndrome is a developmental disorder that affects girls almost exclusively. Like Alyssa, most girls with Rett syndrome seem to develop typically for the first 6 months to 18 months, but then lose skills such as speaking, crawling or walking, and using their hands. Eventually, most need help with every activity of daily life. Estimates suggest that Rett syndrome occurs in one out of every 10,000 to 15,000 girls born in the United States.