Fragile X syndrome is a debilitating genetic neurodevelopmental disorder that affects people worldwide, but many doctors don't know anything about it, let alone have the resources to properly diagnose or treat it.
The UC Davis MIND Institute is home to several of the world's leading experts in fragile X syndrome and works globally to educate clinicians and families on how to identify, test and provide care for those born with the disorder, often associated with autism.
This multimedia story documents one such outreach effort in Serbia and the lives of the Cvijetic family and their search for help for their 6-year-old son, Demetrije.
Diagnosed with fragile X syndrome through the efforts of a MIND Institute-trained physician, the affectionate boy has never attended school, cannot speak or feed himself with a spoon or fork. His parents desperately hope he can someday have a productive life.
MIND Institute experts in fragile X syndrome are available for media interviews about their international work and ongoing research. They include:
Randi Hagerman, a pediatrician and professor at UC Davis, and one of the world's leading experts on fragile X syndrome and related conditions and their treatment.
Leonard Abbeduto, a psychologist and director of the UC Davis MIND Institute who is internationally renowned for his work on the development and use of language in individuals with intellectual disabilities, including those with fragile X syndrome.
David Hessl, a child clinical psychologist and professor at UC Davis whose expertise include the cognitive, emotional and behavioral evaluation of children with fragile X syndrome.
The MIND Institute will next bring their expertise to Cartagena, Colombia for the Pan-American Conference of Neurodevelopment: Autism and Fragile X Syndrome, April 16-17 and then to Quito, Ecuador for another conference April 20-21.