AIS

Learning Compassion through Rett Syndrome

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.

Connect

Related Resources 
Rettsyndrome.org: Relentlessly pursuing research to deliver treatments and ultimately a cure for Rett syndrome while empowering families with the resources, connections, and encouragement they need to thrive
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
 
AIS

Listen on Spotify, iTunes, Google Play, or Anchor. 

Do you need genetic counseling?

Book a session with a genetic counselor on our network.

Would you like to support Patient Stories?

Donate $1 to Patient Stories. Your support means the world.

We love that you're here.

Do you like our content? Join our mailing list to be first to receive updates.

You have Successfully Subscribed!

Share This

Share this post with your friends!