Rarely Normal

Support systems for those going through 'rarely normal' circumstances are critically important, which is why we're so blessed to have Lisa (Mueller) Welsien in the studio this week. Her nephew Kyle had CHD (congenital heart disease) and her love, light and support for her sister and family is a life lesson we'll continue to carry with us.

It was an absolute privilege to have Nicole Johnson in the studio this week, to discuss FOXG1 syndrome and her daughter Josie. Nicole and her warrior team of researchers, fund raisers and awareness creators left us in awe. Her children's book, Joyfully Josie is also a 'must read' for all parents and educators.

What an inspiration. The epitome of 'rarely normal,' Amy joins us this week to talk about her experience surviving viral encephalitis. From learning to walk and talk again, to running marathons, she is a true inspiration and example of the power of the human spirit.

What a force of energy. We're thrilled to have Nicole Tatgenhorst in the studio this week, after we slid into her DM's! Her daughter has BRAT1 and we learned so much about the importance of inclusion, empathy and the similarities between rare diseases,

This week we're joined by Tracey Lord, who captures the essence of what it means to approach hard things with humor. Her 9 year old daughter Ari has Autism Spectrum Disorder (ASD) and Tracey took us on a journey from her diagnosis to current day therapies. Tracey AND Ari are a force to be reckoned with

We're so privileged to welcome Nina to the studio this week and shine a light on her son Beau. Her realness when it comes to her grief journey and love for Beau was incredibly touching. Hopefully this episode will provide support for other child loss parents. While grief is personal and unique, its important to know you aren't alone.

What an incredible conversation we had this week with Ada Lio. Lukie may be the CEO of the household, but Ada and her husband are on a mission to find a cure for ZTTK. We were overwhelmed by her grace, light and perspective on parenting a child with a rare disease. Listen now and check out https://lukie.org/

This week, we welcome Meghan Johnson to the studio, for an incredibly heartfelt and powerful conversation about her daughter Grace. Grace was stillborn and we're incredibly grateful for Meghan's vulnerability and openness. We learned so much about what the experience is like and the importance of community and connecting with people of shared experiences.

This week, we welcome Sarah to the studio. She shares the story of her daughter Summer, who had BRAT1. The small but mighty BRAT1 mom group is a force to be reckoned with and we're honored to be able to share her story.

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 has CDKL5  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.

We're kicking off the Rarely Normal Podcast with the inspiration behind it all. In our first episode, we talk with co-host and child loss mom, Lindsay Weekes about her journey with son Quinlan who lived with a BRAT 1 gene mutation.