Tell Us What EB Means To You (page 3)

EB to ME

It is an honor to care for each of my EB patients and I am so grateful that the patients and families place their trust in me. While I don't live with or directly care for someone with EB, I commend every one of my families for the love and dedication you have not only for your child but for the entire EB community. Not a day goes by that I don't think about all my patients. I wish for nothing more than a cure for you all! Thank you for allowing me to help provide the best care possible for you and your family.
- Kellie Badger BS, RN (Phoenix Children's Medical Group-Dermatology Epidermolysis Bullosa Clinical Coordinator)

My husband and I own a non-profit softball team that plays to raise money and awareness for EB. Because of this team we have met amazing people! Cassie England had EB and became best friends with my daughters. Cassie showed my girls how to love, care for others, and see that everyone is the same no matter what is different. She used to tell my girls that EB isn't her disease, it was a disability, and she wasn't going to let a disability stand in the way of her being happy. And it didn't! Up until the day she gained her wings, she was happy, loud, bossy :-), full of life, an amazing friend, and an amazing person. We miss her dearly and our girls still talk about her every day. We have a big picture of her in our living room, and that picture reminds us to keep raising awareness for EB, to keep fighting for a cure, and to remember to shine every time you walk out the door. #EBtoMe is an opportunity to help those who need it. #EBtoMe is to find a cure!
- The Thompson Family

I knew nothing about EB until my wife came across baby Easton’s Facebook page soon after he was born. Needless to say, I was blown away by this horrible disease. From the obvious pain and suffering the children go through in there day to day activities, to the financial expense that is put on the parents to adequately care for these precious children. I now follow multiple EB kids on Facebook, reading their stories and seeing their pictures. EB has forever opened my eyes and made me more aware. Thank you debra of America for everything you do for EB families!
- Felipe Martinez

I am an EB patient and mother to five wonderful children. Four of the five also have EB. We have EB Simplex. I also have a grandson with EB. I found out about debra of America in 1985 and have stayed connected. We appreciate the fact that we have such a wonderful resource available for our family. Thank you!
- Pamela Bohon

A decade or so ago I saw a documentary called "The Boy Whose Skin Fell Off." It was an informative but disturbing picture to watch but really didn't impact my thoughts for long.  Five years later my grandson was born with JEB.  He has the strongest parents, siblings and support group around him, and for that we're grateful.  Still, we want Super Gabe and all kids like him to be pain free and cured.  For him to be 'ordinary' would be extraordinary.  Let's help push this genetic condition into the dark corner of conquered diseases.
- Grandma Gail

I first encountered EB in 1992 when my neighbor's nephew was born with Junctional. None of us had ever heard of it before. Kyle was a beautiful little boy with a great disposition and he never seemed to let EB hold him back. I was saddened by Kyle's condition, but amazed and intrigued by his attitude and zest for life. I began to become aware of other EB families through debra of America and was thrilled when their Patient Care Conference came to Cincinnati in 2010. I volunteered to work in the kids room and got to meet and interact with the children. I returned again in 2014  when the PCC was in Nashville. I got to meet even more children and their parents and it was an amazing time. debra of America became a charity partner at the Flying Pig Marathon in Cincinnati in 2013 and I have walked every May to raise money for Epidermolysis Bullosa. I am thrilled that the Lord has used me to help in a small way and I hope to be able to continue being a part of this community. I definitely feel that I am the one who has been blessed to be able to interact with these families.
- Jan Chadwick

“Kara, do you want to meet Debra?” my co-fellow, Seniz Ergin, asked me one day. “Who’s Debra?” I asked. And so it was by a very fortunate chance that I was introduced to this amazing organization. debra of America turned out to be a family and a giver of hope to patients with Epidermolysis Bullosa. I had a chance to volunteer at their annual fundraising benefit in October 2014. At the venue, I watched a kid with EB all bandaged up but dressed to the nines playing cards with his mother. I caught myself teary-eyed. How can one so little bear so much burden? Then my attention shifted to the smile he had on his face. He was courageously doing his part. And I knew that I had to do mine. Be aware. Be involved.
- Kara Torres

When my niece Erica called me to say she just gave birth to a beautiful girl named Mercedes Rain, I cried my eyes out. My niece, who I love like a daughter, had a daughter. My mom, Erica’s grandma had passed away a year prior. There were a lot of mixed emotions, happiness of course and a touch of sadness that Mercedes and my mom wouldn't know each other. Not too long after Mercedes was born, Erica and her husband Rob noticed a problem. I remember them bringing her to numerous doctors and hospitals trying to find out what was wrong. Finally, someone diagnosed Mercedes with EB. From that day on, our family's mission has been to find out everything we can about the disease and to spread awareness and raise money for research. And Erica insists that my mom is watching over Mercedes. I believe this to be true.
- Joan Harris

I first learned about EB ten years ago when I happened upon Jonny Kennedy’s story in the TV documentary “The Boy Whose Skin Fell Off.” Being fair skinned, I experienced quite a few second-degree sunburns in my youth. Knowing how painful they can be, I cannot even begin to fathom the pain and suffering those with EB have to endure, and on a daily basis. What amazes me the most about these precious individuals is that even so, and in spite of it all, they courageously live the life they’re given to the fullest. They truly know what life is all about and are such an inspiration to me. It is my hope that as more people become aware of EB, even greater advances will be made to help these beautiful children.
- Holly Jarvinen

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