Tell Us What EB Means To You (page 6)

EB to ME

I remember when my son was born; he was missing skin from his hands and feet. His condition continued to deteriorate in the next couple days after his birth. I felt terrified and alone. Receiving the diagnosis of EB brought little comfort. It was devastating and to say it changed my life forever is an understatement. EB means a great many things to me now. It means having to reach inside and find a strength I never knew existed before. It means having to put on a brave face even when I feel helpless and afraid. Watching someone you love so much suffer and not be able to take it away is something that, at times, seems impossible to endure. It means many nights filled with anxiety and tears because there is no time or place for that during the waking hours. It means giving up that fantasy of a future that never really existed and focusing on the present. It means paying extra attention to all the good moments in life. I appreciate and fully enjoy every triumph, every pain free day, every smile, and every hug. It means realizing that every day truly is a gift. Most of all EB means filling my heart with hope instead of despair and fear. I hope that my son will continue to overcome all the obstacles EB causes. I hope that he is able to lead a relatively normal life despite this horrible disease. I hope that he will live to see adulthood and beyond. I hope that someday there will be a cure that will end his pain and suffering.
- Christina (Alex's Mom)

My niece Keisy is 7-years-old and is an angel full of light. She lives in the Dominican Republic where it is very hot, humid, and dusty - and where doctors know very little about Epidermolysis Bullosa. She's an honor student and has to be so strong because kids don't understand her disease and make fun of her or don't want to play with her thinking that she is contagious, but still she is determined to go to school and her biggest dream is that one day she will cured. Thanks to debra of America for all of their support to my family. Without their help, it would be a lot worse for our little angel.
- Rosa Ramirez

My son Cole has EB.  He’ll be 23 in September.  I admire his courage and am in awe how he handles himself in the day to day situations that so many people take for granted. Such a cross to carry! I am so thankful for Cole and am well pleased of the man he has become. He has much life and such a life to live!  Cole loves people but is also happy in his own company. Cole is a reader and a writer and enjoys stories of survival and apocalyptic nature. Cole is introspective but not shy. Cole does carry a lot inside, he seldom complains and is reluctant to express discomfort or share his pain for fear of burdening his mom or me with it. We remain hopeful for a cure and pray that those who suffer from EB will find peace and a pain free life!  
- Peter Connelly, Baton Rouge, LA

Our sweet, stubborn little Lily has Recessive Dystrophic EB. We had no idea what that was or even meant. She was breech my entire pregnancy and was born via C-Section, so that's why she's stubborn! In a sense, it saved her life. The first 2 months in the hospital were horrific. No one really knew what to do or how to handle her, and it seemed like every day there was something new and scary we experienced and learned. But with the help of this organization and many others like it, and the help of other parents, Lily has had minimum blisters and wounds. She will be a year old April 18th. We honestly didn't think she'd make it this far. We know we have many more challenges to face as she gets older, but she is a tough kid with a huge personality and I know she can handle anything life throws at her. She's our little flower and we love watching her bloom.
- Danielle, Lily's mother

As a mother of a teenager with RDEB, I have a love/hate relationship with Epidermolysis Bullosa. My pregnancy was a normal one. I wanted her to have her dad's dimples, and he wanted her to have my blue eyes. When the doctor placed her on my chest after delivery, I saw those two things in her little round face immediately. Then my world was turned upside down as she was whisked away from me to the NICU. My new chapter in this book of life was just beginning. EB has taught me unconditional love, unbelievable strength, and how great my faith can be. If Harlee had been born an average child, I do not believe I could truly understood the love of a parent for a child. She has shown me strength, courage, and determination that most children/teenagers do not have. She has also shown me it is ok to cry and find that strength through the tears. EB does contribute to every aspect of our life - what we eat, when we go on vacation, where we go on vacation, what clothes we wear, and this is just the tip of the iceberg.  She has had so many surgeries that I have lost count. Harlee's pain at times is almost unbearable, but we continue on. We are survivors. I would give my life for a cure for not only Harlee, but the friends we have met on this journey. But if asked if I could go back in time and never have her - my answer would be a resounding no. Without EB and Harlee, I  would not be the person I am today. God's grace covers us every day.
- Suzanne

My life is a wonderful life and EB is just a passenger! Hi, my name is Christine. I am 61 years old. To me EB is a devastating disorder, but not so bad after I decided to handle it my own way. For anyone who is caring for a child or their baby, I know it is often a matter of life or death. I pray a cure is found someday, especially for the children! As for me, I’m doing OK. I’ve found shortcuts & money saving ways to care for myself. Every day I remind myself how blessed I am to have a husband who is always finding ways to make my life easier. Also I have two talented, healthy children who are so supportive no matter how busy their own lives are, and I have one wonderful son-in-law, who I consider one of my own. About 1½ years ago I lost my right leg to cancer, which was a result of EB. That was a blessing, too. No more cancer and much less pain!  I try to keep on smiling, I don’t feel sorry for myself and I don’t dwell on it.  Hey, “Life goes on!”
- Christine

EB... as a grandmother this rare disease has forever changed my life and the life of my grandson Blake and our whole family. EB is heartbreak and hope. EB is determination and unwavering love. EB is reality and ongoing research. For most, a true life changing event is only read about in the paper or seen in a movie. EB is rare and real. I pray every day that ongoing research will soon bring about a breakthrough cure and it will not come soon enough.
- Kathy Schipma

I lost my son Robert Joseph Heier on December 9, 2006 due to EB. He was only 5-years-old. My wife and I had a healthy pregnancy and had never heard of EB until it happened. I miss him every day. RIP my sweet boy. Thank you kindly for listening to what EB means to me. God bless all and hoping for a cure someday.
- Joey Heier

EB is a rare anomaly I’ve been living with for 40 years.
- Sheila

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