6: The Story of Nora

Nora is unstoppable. Her determined and ambitious spirit is housed in a body affected by the most common form of dwarfism, achondroplasia. Her mother Emily shares all about the obstacles that Nora has overcome in her two years of life, and her confidence that she will continue to overcome throughout her life. In this episode, we also talk about the lack of knowledge about rare diagnoses and the power in connecting with other parents in the achondroplasia community via social media. Emily is a special education teacher residing in central Massachusetts with her husband, Nora, and 9-year-old son Nate. For transcript, comments, images, and more visit the website. https://therarelifepodcast.com/show-notes/ep-6-story-nora TRANSCRIPT: Madeline Cheney  0:35   Emily, thank you so much for sharing your heart today. Emily  0:38   Thank you for having me. Madeline Cheney  0:39   Yeah, of course. So if you could start out by just telling us about your daughter Nora, what is she like? Emily  0:46   Nora is amazing. So she's two years old. Um, we found out at about 26 weeks that she was going to possibly have a form of dwarfism called achondroplasia. Her ultrasounds were measuring--her long bones were measuring far behind average height babies. So that was kind of a shock to us. In the beginning she was very healthy in all the tests that she had. Everything else was going well. They just kept an eye on her growth. So that's kind of what led us down that path to start....