Episode 15: Frankie and Carrie – living with Mowat Wilson and West Syndromes

Episode 15 Transcript

When Carrie Avila-Mooney first got in touch with me, she said was a listener of the podcast and that she used the podcast as a kind of therapy for herself. She said in her toughest moments she had thought about what would she say if it was her episode, how would she explain her story? She told me it helped her to go through it and explain it, to unpack the details and talk about it in her mind.


Today, instead of telling herself her story, I am incredibly proud to share Carrie’s story with you all. Carrie is married to Gabe and they have two children, Benny and Frankie. Since Frankie was born, they have been ¬†rollercoaster ride of hospitalisations and seizure control.


Frankie has a rare combination of Mowat Wilson Syndrome and infantile spasms, or West Syndrome. This episode tells their story.


You can listen to the podcast right here, or subscribe through itunes or Stitcher radio. The links are right there to the right of the screen.

This episode of the podcast was brought to you by Wonderbaby. Wonderbaby is a fantastic resource for families with vision impaired children or children with multiple disabilities.


One thought on “Episode 15: Frankie and Carrie – living with Mowat Wilson and West Syndromes

  1. me+hub+3

    What a wonderful family. They are very lucky to have great family support to help them.

    Once again a great story. Thanks for sharing.

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