Once Upon a Gene: "A Little Love"

Patient Stories with Grey Genetics

Today, between episodes of Patient Stories, we are sharing an episode with you from another podcast, Once Upon a Gene. Host Effie Parks previously shared her story on Patient Stories: "New in the Family: Ford and CTNNB1." Effie then went on to start her own podcast.

Once Upon a Gene is a podcast that explores the world of raising children with disabilities and rare genetic disorders. Effie shares her own personal story of raising a child with CTNNB1 syndrome, while trying to find the non-existent rule book of bringing up such a special kid. This podcast features interviews with fellow parents, therapists, doctors and anyone else who wants to share their story.

Effie's interviews with parents are uplifting and help to build community and connection among families navigating unexpected challenges and also finding unexpected joys.

In this episode, "A Little Love," Effie interviews her friend Mckenzie Vander Hoek about her daughter Everly, who has a diagnosis of achondroplasia, the most common form of skeletal dysplasia (more commonly known as dwarfism).

Links and Resources Mentioned

This Changes Nothing

Everly’s Story - Dear friends and family letter

Little People of America Association

Evie + Lolo on Instagram - @evieandlolo

It was difficult to choose just one episode to share from Once Upon a Gene! You can find Once Upon a Gene on Twitter, Instagram, Facebook and on Apple Podcasts, Spotify, Stitcher, and Overcast. If you remember Effie's interview about her son Ford and want to hear more of Effie's story, listen to Effie's interview with her husband Casey: "The Dadurday Chronicles."