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 62 | Madeline’s Story – The sibling of a child with a rare genetic condition
Podcast Show Notes
“It’s been rough. It’s like your heart is in two different places.”
Katie, Certified Child Life Specialist interviews Madeline, a mom from Utah that shares her son’s experience with having a rare form of skeletal dysplasia and how her daughter has dealt with their journey.
Madeline is host of The Rare Life podcast which was inspired by her son, Kimball after his arrival into the world. In this episode, Madeline walks us through what it’s been like for her daughter.
Madeline is a fierce, inspiring and talented human who has an ability to connect with other parents and professionals. She reminds others often that “your feelings are valid, and you shouldn’t feel shame about them.”
You Might Also Like…
Understanding Homocystinuria (HCU): How a mother uncovered her son’s diagnosis- Melanie’s Story
As parents, we rely on routine tests to tell us our children are healthy. For Melanie and her husband, Ryan, in Vancouver, British Columbia, it took a routine eye doctor's appointment to uncover a startling truth about their 12-year-old son, Masen, an energetic hockey...
Autism, Advocacy and the Power of a Medical ID: Tara’s Story
“You don’t have good days and bad days — you have good moments and tough moments. And if you only count the bad ones, you’ll miss all the silver linings.”- Tara Cohen In this deeply moving and empowering conversation, Tara Cohen, Executive Vice President at Lauren’s...