Rarely Normal

This week, we welcome an incredibly therapeutic guest. Olivia served as the bereavement social worker at Boston Children's Hospital, supporting parents and families facing unprecedented life experiences. Her warmth and thoughtful nature is palpable.

We loved having Abby in the studio this week. She shared a very real, very honest perspective on what it means to be young, first time parent of a child with a rare disease. Her authenticity and openness is contagious.

We're thrilled to welcome Lisa to the studio this week. Not only has she been an enormous support system for Lindsay but she provides a unique personal perspective on grief, loss and love.

This week we welcome Kristina Coppens to the studio - our first medical caregiver episode! She was the primary nurse of Lindsay's son Quinlan, and they've since built a unique bond and life-long friendship. We talk about what it's like to care for medically complex children and the wide range of support nurses provide their patients and families.

In our final week of Rare Disease month, we welcome Hannah. Her son Sage was born with cerebral AVM (Arteriovenus Malformation) and her story was so moving and enlightening. The way she has connected with his care givers and continues to carry on his legacy is inspiring beyond words.

In this third week of Rare Disease Month, we connect with Jillian Smith whose pre-teen son has ALD (adrenoleukodystrophy). From testing to diagnosis to advocacy, she's a force for creating awareness of and support for ALD.

Week two of Rare Disease month, and we weclome Ali Lofton to the studio. She and co-host Lindsay, met through a BRAT1 group, and she joins us this week to share the story of her son Wyatt. Her perspective on leading with an open heart, listening to your body and advocating for testing was profound. Enjoy!

This week, we kick off Rare Disease month, by connecting with Marissa Bishop whose son Gregory hasCDKL5 Deficiency Disorder (CDD). Her passion for creating awareness for the disease was infectious. As Gregory's mom and #1 cheerleader, Marissa's a powerhouse advocate for rare disease support.

#CDKL5

This week, we're joined by force of support! We talk to co-host Lindsay's, sister Dani, about the enormous sacrifices she made to help care for Quinlan, who lived with a BRAT 1 gene mutation. We discuss their special relationship and the emotions she faced being so close to a child with a rare disease.

This week, we're joined by Kate Manacek. Friends with co-host Lindsay for 25+ years, she provides a unique perspective on how to be a support system for a loved one facing a rare disease or medical complexity.