Talking about Prader-Willi Syndrome with the Host of Walking with Freya
with Anne Fricke
As a newborn, Anne Fricke's second daughter Freya had trouble nursing, slept really soundly, and had hypotonia (low muscle tone). At three and a half months of age, Freya was diagnosed with Prader-Willi syndrome. Anne shares her family's experience with Freya's initial diagnosis, how she found support within the Prader-Willi community, and what their challenges are now that Freya is 8 years old. Anne also shares how she has used writing and poetry to help process her feelings — and how this led her to start her podcast, Walking With Freya.
Connect
- Anne Fricke's website
- Walking With Freya podcast episodes
- Episode 4: “Diagnosis”
- Episode 53: Anne interviews Eleanor about Grey Genetics and genetic counseling
- Anne’s poem “Kintsugi”
- There Is Joy To Be Found Here: a writing journal for parents of children with special needs
- Prader-Willi California Foundation (PWCF)
- Prader-Willi Syndrome Association (USA)
- Walking with Freya on Instagram: @walkingwithFreya
- Walking with Freya on Facebook
Do you need genetic counseling?
Browse our network of genetic counselors and schedule when you're ready.
Not sure where to start?