Jennifer's Celebration of Life
Jennifer passed away on November 30, 2018. She will be remembered for her inspiring strength and resilience while advocating for those living with this devastating disorder. Thank you, Jennifer, for allowing EB Research Partnership to share your story. You can make a donation to EB Research Partnership to celebrate Jennifer's life below.
My name is Jennifer and I have Recessive Dystrophic EB. I suppose I have lived long past my “expiration” date as far as EB is concerned. I’ve spent most of my life trying to prove wrong every doctor, nurse, researcher and specialist that told my parents there was little chance I would live to see adulthood. Over and over, my parents heard: “She won’t walk, she won’t have hair or nails, she probably won’t grow, and most likely she will die young."
There was very little known about the EB when I was born, so my parents did the best they could with the little knowledge they were given. I am so grateful they never listened to anyone who told them I didn’t have a chance of surviving. They never told me I couldn’t do something, even when they had to close their eyes or cringe when I tried to do something that wasn’t physically a good idea. I learned my limits on my own and I found that I wasn’t anywhere near as limited as people wanted to tell me I was. I danced, sang and participated in theater while I was growing up which gave me confidence. I learned to be creative since I couldn’t be athletic. I used my mind, which has never been affected by EB. I graduated high school, I went to college and did all the things my peers were doing. I have a Masters in Marriage and Family Therapy and Art Therapy and have worked with all different types of children. I enjoy helping people and I want kids, and especially kids with EB, to know that anything is possible, even if there are obstacles in the way.
The reality is nothing in life is easy. Have I experienced more difficulty than some? Maybe, but I have used it to make me stronger. I can be sad about having EB or I can enjoy the life I have while I have it. EB has taught me to appreciate everything I have. I won’t lie that sometimes it can be overwhelming, painful, and frustrating. I don’t find the physical part of EB to be what’s is the hardest. Don’t get me wrong—blisters, wounds, hours of daily bandaging, monthly surgeries are certainly no fun, but it’s the emotional impact EB has on you, your family, and friends that is the hardest.
I’m considered “old” for someone with my form of EB. I have outlived a lot of friends who also had EB and I sometimes wonder why I am still here. I struggle with skin cancer now, on top of all the other difficulties of EB, but I’ll keep fighting. EB may take from me physically but I refuse to let it run my life.
There was very little known about the EB when I was born, so my parents did the best they could with the little knowledge they were given. I am so grateful they never listened to anyone who told them I didn’t have a chance of surviving. They never told me I couldn’t do something, even when they had to close their eyes or cringe when I tried to do something that wasn’t physically a good idea. I learned my limits on my own and I found that I wasn’t anywhere near as limited as people wanted to tell me I was. I danced, sang and participated in theater while I was growing up which gave me confidence. I learned to be creative since I couldn’t be athletic. I used my mind, which has never been affected by EB. I graduated high school, I went to college and did all the things my peers were doing. I have a Masters in Marriage and Family Therapy and Art Therapy and have worked with all different types of children. I enjoy helping people and I want kids, and especially kids with EB, to know that anything is possible, even if there are obstacles in the way.
The reality is nothing in life is easy. Have I experienced more difficulty than some? Maybe, but I have used it to make me stronger. I can be sad about having EB or I can enjoy the life I have while I have it. EB has taught me to appreciate everything I have. I won’t lie that sometimes it can be overwhelming, painful, and frustrating. I don’t find the physical part of EB to be what’s is the hardest. Don’t get me wrong—blisters, wounds, hours of daily bandaging, monthly surgeries are certainly no fun, but it’s the emotional impact EB has on you, your family, and friends that is the hardest.
I’m considered “old” for someone with my form of EB. I have outlived a lot of friends who also had EB and I sometimes wonder why I am still here. I struggle with skin cancer now, on top of all the other difficulties of EB, but I’ll keep fighting. EB may take from me physically but I refuse to let it run my life.
