THIS is what a Support Team looks like! Life Grows Around the Grief: Parents Holding Space for Parents

"It's not, obviously, the way we would want to meet, but I'm so grateful that we did" - Anne Davis says this in regard to becoming "chosen family" with Kaytlynn and Anthony - parents of Addilynn Grace - who had severe Junctional EB - and passed away on December 22, 2022. 

Katlynn and Anthony include Addilynn in everything they do. They also do so much to raise awareness about Epidermolysis Bullosa. Both families take much needed time in this episode to hold space for the grief journey and share stories about their beautiful "butterfly" children. 

Anthony says, "looking back - we were so worried about taking care of her - we didn't realize she was the one taking care of us". 

Thank you for listening! 

Learn more about EB and the voices in this episode:

EB in depth

Meet the family behind Heroes for Hallie Grace

BUY YOUR TICKETS to the 3rd Annual Butterfly Ball

Donate and Join the Fight

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