• Episode 16 - A Koolen Mama Tells Her Story of Living with, and Parenting Children with Koolen-de vries syndrome.

  • Oct 3 2022
  • Length: 41 mins
  • Podcast

Episode 16 - A Koolen Mama Tells Her Story of Living with, and Parenting Children with Koolen-de vries syndrome.

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  • Summary

  • In this episode I interview Becky Tilley , who describes herself as "a rare mama living with Koolen-de vries syndrome." Becky has  three beautiful children and her two youngest also have KDVS. She is a very passionate writer and rare disease advocate.  In her open and beautiful story, Becky shares about her own life, growing up as someone with different learning abilities who struggled in school. As a mother trying to understand her second son's developmental challenges, Becky learned that she, and her son, shared the genetic disorder KDVS. Becky's next child is also a KDVS baby. Becky shares her challenges and successes and how she has turned this story into one of love and opportunity. 

    Becky writes at her WordPress blog site "Koolen Mama", and hosts an international rare disease support group on Facebook,  "Mamas Heart". If that wasn't enough, she also hosts a KDVS Support Group for families living in the United Kingdom. She has written several articles and blogs published by a number of rare disease charities and magazines.

    This interview is about acceptance and love and celebrating differences. Becky's words, "What starts as the breaking of you can be the making of you" truly resonated with me. Please follow Becky on Instagram @koolen.mama 

    Come share your thoughts on this episode where you find me:

    Facebook: Safe Harbor Podcast
    Instagram: @theresabartolotta
    Email: safeharborpodcast@gmail.com
    Webiste: theresabartolotta.com
    Do you have suggestions for guests or books to review? Please share! 

    Please rate and review the podcast- it helps others find us.

    Stay well and thanks for listening - I know your time is precious so I send my gratitude to you!


    Come share your thoughts in the Safe Harbor Facebook group. And find me on:

    Instagram: @theresabartolotta
    Facebook: Safe Harbor: A Podcast for Parents of Children with Special Needs
    Website: https://www.theresabartolotta.com/

    Please rate and review - it helps others find us. And thank you for listening! I know your time is precious and I send my gratitude to you.

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