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Learning Compassion through Rett Syndrome
Manage episode 310287067 series 3051496
Grey Genetics द्वारा प्रदान की गई सामग्री. एपिसोड, ग्राफिक्स और पॉडकास्ट विवरण सहित सभी पॉडकास्ट सामग्री Grey Genetics या उनके पॉडकास्ट प्लेटफ़ॉर्म पार्टनर द्वारा सीधे अपलोड और प्रदान की जाती है। यदि आपको लगता है कि कोई आपकी अनुमति के बिना आपके कॉपीराइट किए गए कार्य का उपयोग कर रहा है, तो आप यहां बताई गई प्रक्रिया का पालन कर सकते हैं https://hi.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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