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June 7, 2023 56 mins

On this emotionally charged episode, we have the privilege of sitting down with Joe Davis, the father of Hallie Grace, a beautiful baby girl who battled a rare and devastating condition called Junctional Epidermolysis Bullosa (JEB). Join us as we delve into Joe's personal journey and gain invaluable insights into his experience as a father to a child with this rare disease. Through Joe's candid account, we hope to raise awareness and compassion for families affected by JEB. Tune in to this heartfelt episode, where we listen to a father's story of unconditional love, loss, and the power of embracing every precious moment.

  UPDATE on NEW EB Treatment Just days ago, the FDA approved the first official treatment for Dystrophic EB. This is a huge step forward in the EB Community @wefighteb - The FDA has given the green light to Krystal Biotech's VYJUVEK, a topical gene therapy. Get more info at debra.org

 

Learn more about the voices in this episode:

• Joe Davis 

Email: butterfly@hallieflies.com

Facebook - Hallie Grace, Tiny Butterfly Warrior

Instagram - tinybutterflywarrior

Raise Awareness - In Loving Memory of Hallie Grace Davis (hallieflies.com)

Donate to Heroes for Hallie Grace

 

Hosted & Produced by Dee Daniels with DeeDanielsMedia

Theme song written and performed by Hallie Grace

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