Child Life On Call |  Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

Episode 7 | Part 1 of Mandy's Story - A son born with a rare genetic condition


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Episode 7 features the first part of Mandy’s story. Her son, Nolan, was born five weeks early with a host of symptoms which led them to find that he was diagnosed with a condition that only four other people are currently living with. Nolan is the ninth person in the history of medical science that has been diagnosed with Mandibuloacral Dysplasia Type B (Mad B).

In part one of Mandy’s story, she talks to us about how doctors and specialists eventually came to diagnose Nolan. It ended up being an unsuspecting doctor appointment with a Dermatologist who had studied Progeria in medical school who wrote the diagnosis on a sticky note that led them to this rare condition.

Part two of Mandy’s story will be available next Monday morning when she talks about what living with a child who has Mad B is like, how undeniably amazing Nolan is, and how she and her family cope with it.

Thank you to Gruene Photography for the beautiful pictures of Mandy, Nolan and their family. We can’t thank you enough for taking the time to give Mandy and her family these georgeous photos that they will keep forever. If you are near New Braunfels or Gruene, Texas, go book Gruene Photography. Follow her on Instagram or Facebook.

Thank you to Stephanie Sobic Gauthier for help in the storyline editing of this episode.

Please subscribe to the Child Life On Call Podcast and leave a review on iTunes. If you would like to share your story or have questions about this podcast, you can email [email protected] or submit your information via the website childlifepodcast.com.

 

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Child Life On Call |  Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & SupportBy Katie Taylor, CCLS

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