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.
Coming home, I felt so many emotions - anger, shame, guilt, disbelief, grievance, anger, fear, anger, then a few weeks in, I made the decision to lean into Caroline and EB and with that came acceptance, a patience I never knew I had, trust, confidence, joy, still fear, anger not so much, but still every now and then, a love that I have never known, beauty like I have never seen in my life, a closeness to Caroline Georgia that I have never experienced with anyone. Caroline Georgia completes me. When I look into her eyes time freezes and it’s like I know exactly what I need to do, and we have this understanding. Caroline Georgia is wise, and she saved me.
The next few weeks, we would be learning from mistakes like no heat for Caroline. I didn’t know heat = blisters for her.
Caroline at 2 months would now develop breathing difficulties and we would receive her subtypes which is severe junctional EB. From that point onward, her fight would start and so would my endless search to find a way to save her, knowing there is no cure… a mother can and will move mountains for their kids. I think it’s beautiful the way a mother's search doesn’t end.
In the hospital, we were with Caroline Georgia for over a month. I advocated and built a powerful strong team for Caroline Georgia during my postpartum, grieving her diagnosis, mother of 4 children, unable to go back to work. It was in EB that I lost everything, and it was in EB that I learned everything, and it was in EB that I found myself a better woman and a better mother. It was in Caroline Georgia that I found out nothing moves faster than the love of a mother. I built her team with doctors from the UK, all the way to Philadelphia, California, and Colorado.
Fast forward, we are finally out of the hospital. Every month on the 26th that my sweet Caroline is alive, we celebrate with a cake. We are now celebrating that being present is easier when you have a disease like EB that makes it impossible to hide even if you wanted to and forces you to be vulnerable in every situation possible. She enjoys being read to every morning, so we read, she is very ticklish, she loves to watch everyone in our home especially her siblings. Caroline Georgia is sassy she is strong and wise, she is beautiful and courageous, she is very smart, and she is my butterfly girl. She is incredibly sweet. I’m lucky to be her mother. 
Challenges that I’ve experienced are: not feeling guilty if I take time for myself, trying to have time with my husband; our time to do fun things together without being so exhausted to even go for a walk. Not working anymore. I loved my job, and I miss my job. I miss me. Forgetting to laugh. The feeling of losing myself entirely and when I do finally get to laugh, genuinely not feeling guilty for having a good laugh because EB never wants to leave me or her; he is always there in the back to remind me not to enjoy too much. It’s a scary place to be I’d wish this on no one.
Something I wish people would know about EB is how traumatic this diagnosis/disease is and how we need to educate society about what EB is and help find funds for a cure.
I wish people could grasp how difficult day to day is, as well as the type of love you build caring for someone with EB. And I wish they knew how expensive this can be.
debra of America has supported us since Caroline Georgia was born. I do not know what I would do without debra. It all started around December 2023 when I called the debra Nurse. She helped save me though when Caroline was first born, I wanted to give up. I did not honestly think I could do it, and the debra Nurse, I believe an angel on earth drew me back to reality, comforting me, guiding me on how to care for my newborn daughter with EB.
debra also saved my daughter by sending us her first set of supplies. When Caroline was born, we did not have a clue nor did we get sent home with anything from our hospital. Thank God for debra. They sent us supplies for Caroline Georgia. This organization is the best. They are family and I would not have come this far with Caroline without debra.
EB also helped change my life for the better. I have a deeper appreciation for things I have overlooked in the past. I see things for what they really are now and not superficially.
I feel things in 3D hindering any pride left in me and making vulnerability an accessory that I can never escape, forcing me see myself in present moments. Gratitude is a way of life even for the smallest of things.
EB has also taught me that I still have a whole hell of a lot more fight left in me still and so long as Caroline Georgia fights her fight is my fight!
EB taught me about love like I’ve never known before EB. It taught me that Caroline Georgia is my soulmate and I love her.
- Aisha, mom to Caroline Georgia
