Making Every Minute Count, Amidst All the Pain

Simply put, living with EB hurts, but as cliché as it may sound you need to take the good with the bad. My daughter, Sarah, was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB). She turns 12 this September, and we’re having a sleepover birthday party at a local hotel. We planned early because that’s part of the fun. We pore over party supply catalogs, pick out decorations and favors.

In Loving Memory of Caroline Georgia (10/26/2023-8/11/2024)

Caroline Georgia was born on EB Awareness Day on October 26, 2023. Call it fate. We left the hospital within 48 hours after delivery with only her fingers being raw and a raspy faint cry. I knew immediately something was wrong, and within her first 48 hours of birth, I learned everything I could about EB. 

This is the body.

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