NEWS | January 22, 2020

Helping the world understand, detect and treat a devastating genetic disorder

UC Davis MIND Institute experts in fragile X syndrome bring hope to Serbia and beyond

(SACRAMENTO)

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.

Demetrije Cvijetic, who has fragile X syndrome, plays outside his family’s Belgrade apartment. Demetrije Cvijetic, who has fragile X syndrome, plays outside his family’s Belgrade apartment.

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. It chronicles the lives of the Cvijetic family and their search for help for their 6-year-old son, Demetrije, an affectionate boy who has never attended school, cannot speak or feed himself with a spoon or fork.

Demetrije was diagnosed with fragile X syndrome through the efforts of a Serbian doctor who received training at the MIND Institute, then returned to Serbia to bring knowledge and hope to families like the Cvijetics in her country and throughout Eastern Europe. This is their story.