Talking about Prader-Willi syndrome with the host of Walking with Freya

Patient Stories with Grey Genetics

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.

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Links and Resources

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”

Purchase the writing journal Anne created: 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)

Follow Anne’s podcast Walking with Freya on Social Media:

Walking with Freya on Instagram: @walkingwithFreya

Walking with Freya on Facebook

Check out other Patient Stories podcast episodes.

Read other Patient Stories on the Grey Genetics Patient Stories Page

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