Learning Compassion through Rett Syndrome

Episode 54 of the Patient Stories with Grey Genetics podcast, hosted by Grey Genetics, titled "Learning Compassion through Rett Syndrome" was published on August 18, 2020 and runs 79 minutes.

August 18, 2020 ·79m · Patient Stories with Grey Genetics

Summary

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. Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show. 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. Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page Do you want to support Patient Stories? You can now make a donation online! Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media. Patient Stories on Twitter: @GreyGeneticsPod Patient Stories on Instagram: @patientstoriespodcast Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone. Not quite ready for genetic counseling but still looking for guidance? Check out our new family history review services here.

Episode Description