Tiana Vega was born in May 2013. She was later to hit her milestones than her older sister, Aliya—but she kept hitting them. At 2 years of age, she finally learned to walk. Then she started to regress. When she was 2 ½ years old, she was finally diagnosed with Rett syndrome, an X-linked and progressive neurological disorder. Victor and Jeannette share their experience with receiving a genetic diagnosis for their daughter, how Tiana has impacted their life, and how they’ve found connection in the Rett syndrome and Rare Disease communities.

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Related Resources

Rettsyndrome.org 

Rett Syndrome Research Trust

Rett University: specializes  in teaching teachers, parents, caregivers,  doctors, family, friends how to teach folks with Rett syndrome to read and write. They also teach people with Rett one-on-one through private classes.

Girl Power 2 Cure: Rett Syndrome support organization that provides education tools, fundraising, and family support and connections

The Sibling Support Project

Other Related Links

Boodman, Sandra G. “She began to talk — then mysteriously fell silent. Months later her parents learned why.” Washington Post. October 12, 2019.

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