We’d like to extend our sincere thanks to our episode sponsor, reStickity®. Their innovative, mess-free reusable sticker sets allow families to personalize hospital spaces with familiar photos and comforting images, helping bring a sense of home to the hospital. To...
Episode 7 | Part 1 of Mandy’s Story – A son born with Mandibuloacral Dysplasia
Podcast Show Notes
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 info@childlifepodcast.com or submit your information via the website childlifepodcast.com.
You Might Also Like…
257: The NICU Dad Experience: A father’s view from the NICU [REPOST]-Alex’s Story
What happens when your world changes with a single phone call? In this powerful reposted episode, NICU dad and advocate Alex Zavala shares his emotional journey of fatherhood after his daughter was born at just 27 weeks. From the emergency C-section and NICU stay to...
256: Helping Kids Swallow Pills:Tips and tricks for Parents from a Child Life Specialist -Adina’s Story
Learning to swallow pills can be a major milestone—and a big challenge—for many kids. In this episode, certified child life specialist Adina Levitan joins host Katie Taylor to break down the myths, fears, and best practices behind teaching children how to confidently...