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Learning Compassion through Rett Syndrome
Manage episode 310287067 series 3051496
Grey Genetics에서 제공하는 콘텐츠입니다. 에피소드, 그래픽, 팟캐스트 설명을 포함한 모든 팟캐스트 콘텐츠는 Grey Genetics 또는 해당 팟캐스트 플랫폼 파트너가 직접 업로드하고 제공합니다. 누군가가 귀하의 허락 없이 귀하의 저작물을 사용하고 있다고 생각되는 경우 여기에 설명된 절차를 따르실 수 있습니다 https://ko.player.fm/legal.
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
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
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