"Life is always in the mix of joy and grief, and those things coexist. But this is how I’m going to deal with it." - Joanne De Simone In this episode of the Child Life On Call Podcast, Joanne De Simone shares her journey as a parent raising two sons with...
Episode 50 | Eileen’s Story – A son with Recessive Dystrophic Epidermolysis Bullosa
Podcast Show Notes
In this episode, Annie, Certified Child Life Specialist, talks to Eilieen. She is the amazing mom of a determined, fun loving, 4-year-old hero named Brady. Brady was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB).
While he inspires all who meets him, his favorite thing is just being a typical boy and being treated as such. After a move from Texas to Colorado to find the best care and environment for him, life shifted and their family became advocates in the RDEB community.
Eileen is on the board of the EB Research Partnership and they have an absolutely star studded (like for real a ton of A-listers) event coming up on November 18th that will be streamed on Amazon.
– On November 18th, 2020 at 8pm EST, we will be hosting an extraordinary fundraiser with several A-List celebrities, and streamed on Amazon!!! This is an unparalleled opportunity for others to learn about Brady’s condition, and get us closer and closer to our goal for a cure. Learn more here!!
DEBRA is the organization talked about that welcomes donations of supplies etc for children with EB
Follow along with Eileen and Brody on Instagram and Facebook.
Find more resources, parent stories and support on www.childlifepodcast.com.
You Might Also Like…
235: A Mother’s Journey of Love, Loss, and Resilience- Kathy’s Story
“If anybody was to ask me what is one of my biggest strengths, I have to tell them it's resilience… You can throw almost anything at me and I can handle it. I mean, there isn't anything any bigger in this world than losing a child.” In this heartfelt episode,...
234: Expert Child Life Tips for Supporting Children Through an Upper GI Procedure
Today's episode is dedicated to the loving memory of Dr. Meredith Hitch, a cherished pediatric gastroenterologist at Ochsner Baton Rouge. “You want to make sure that you are ready to be able to prepare not only yourself but your kiddo.” - Emily Martinec, CCLS In this...
