In this week’s incredibly honest and profound episode, we sit down with Jeff Loving, a husband, proud NICU dad, and the author of Holding Onto the Light: A Father’s Journey Through Loss and Healing. Jeff shares the deeply personal, often unspoken, side of grief: the...
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.
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