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

Safe Harbor: A Podcast for Parents of Children with Disabilities

The Safe Harbor Podcast is for parents of children with disabilities. This show enables parents to come together as a community to share, learn and support each other on this complex path. Your host, Theresa Bartolotta, is mom to a young adult with Rett syndrome and has worked with hundreds of families as a pediatric speech pathologist. Email Theresa at safeharborpodcast@gmail.com to join the mailing list and get updates. Join the Safe Harbor Podcast group on Facebook to connect and continue the discussion!

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Safe Harbor: A Podcast for Parents of Children with Disabilities

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

October 03, 2022 • Theresa Bartolotta • Season 1 • Episode 16

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

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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.