Tell Us What EB Means To You (page 8)

EB to ME

We brought home our daughter from China in 2015, and she has EB. We knew she had EB before we said "yes" to her; knowing ahead of time is an opportunity most families don't have. We were able to prepare as best we could, but even so, the wound care learning curve is steep. EB has made her compassion for others strong; when she sees someone hurting or upset, her response is to try to comfort them. She is one of the strongest people I know, and our family is blessed to have her. We cannot imagine our lives without our butterfly.
- Whitney R

"I grew up with a mom that has EB. Watching her get up every morning put on bandages and then put on her clothes was a normal thing to me after a while. Not until I was in High School did I notice how brave she was to get up every morning and continue with the day. Every day she helped me with my school work and encouraged me to be kind and helpful just like her. My mom did not let anything stop her, she was a religion teacher, Girl Scout leader and ran the vacation bible school program at my church. One day I hope that there is a cure for “the worst disease that you’ve never heard of,” but for now I can only continue to raise awareness and raise money for families in need with EB for help with bandages and informational help. Now when I wake up with a sore knee or when I do not feel well I then realize that it could be worst and I could be just like my brave mom."
- Kelly McCauley, Young Leadership Committee

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