Tell Us What EB Means To You (page 4)

EB to ME

I never heard the words Epidermolysis Bullosa until my beautiful son Lucas Patrick came into the world. Lucas was born with the most amazing blue eyes and I instantly fell completely in love. Everything seemed perfect. But within a few hours Lucas began forming blisters on his skin and inside his mouth. By the time my son was three weeks old, with the exception of his beautiful little face, his entire body was covered in blisters. The doctors informed us that Lucas had junctional herlitz EB and his life expectancy was less than two years. Every day with Lucas was a gift and each day I was in awe of the courage and strength my son showed. There were many days that I would be crying and upset because I couldn’t make him feel better. I couldn’t fix this. I couldn’t hold my own child without causing him pain. But on the days I was most upset Lucas would stare at me with his bright blue eyes and I swear it was as if he was saying, “Mommy I’m okay. This is okay.” It’s like he knew he was meant for bigger things than this world. At just five weeks old, my baby boy died in my arms. EB forced me to do the one thing a parent should never have to do, to say goodbye to their child. Over the past three years since Lucas’ death I have witnessed his story inspire others to raise awareness of EB and join our quest to find a cure. We have held three annual Love For Lucas fundraisers benefiting debra of America and I am truly humbled by the outpouring of love and generosity we have received. I have been honored to meet other EB families from all over the country, and just like my own son, the butterfly children of the world astound me with their bravery and determination. EB stole many things from me. I will never hear my son say “Mama.” I will never see him smile. I will never see him take his first step or discover the amazing beauty this world has to offer. I will never get to teach him all the things a mother is supposed to teach her son. EB shattered my heart into a million pieces. But when I feel the saddest my Lucas sends me butterflies to let me know he is okay and still right next to me. EB has taught me to love deeper and cherish every moment I have with those I love, for tomorrow is never promised. I will spend the rest of my life fighting to find a cure for EB so that one day no child has to suffer the way my little Lucas did and no parent ever has to say goodbye to their child because of EB.
- Nicole Hardman

A few years ago, I was assigned to a new role as a Dedicated EB specialist at Edgepark Medical Supplies. Having been in the medical supply business for several years at that point, I was very comfortable in dealing with a variety of serious medical conditions. I soon came to realize though, that EB is unlike any other affliction I had previously dealt with. Learning about the disease, being educated by some of the best clinicians in the country, and working with the patients and their families has forever changed me. The disease is shockingly awful, but those suffering from it and working toward a cure are some of the most remarkable people I could ever hope to know. I have learned invaluable life lessons from these courageous people, and am passionate about repaying them for that with any support I can give. This holiday season, our whole company will be fundraising to support debra of America! I am thrilled that we will be contributing to such an important cause; and look forward to spreading a deeper awareness and understanding about EB throughout my own organization.
- Ruth Barnum (Edgepark Medical Supplies)

The day my daughter Mercedes was born was the happiest day of my life. She was a very healthy baby from day one, but there were clues that something was just not right. After visiting the pediatrician numerous times for what we passed off as sensitive skin and thrush, Dr. Rabon began to get more and more concerned. Mercedes was admitted to the hospital and had every test under the sun run on her only to come back negative. She was so healthy! So why the loss of skin, why the bleeding when she had her bottle? One Sunday, with huge blisters encompassing each heel, it dawned on Dr. Rabon as we left his office. He ran out to the parking lot to catch us and share his thoughts. We were terrified when we read the brief description and we took a trip to MUSC the following week for an official diagnosis. The day Mercedes was diagnosed with EB she was 4 months old. My world came crashing down; this beautiful, healthy little gift would be in constant pain every day. The guilt I still carry with me daily is indescribable. Despite a scary, unexpected diagnosis, Mercedes has shown me what true courage is. She doesn’t care if something will hurt, she tries anyway. She doesn’t let blisters slow her down, she still runs and jumps and lets herself get hurt. She doesn’t let bandages get in her way, she still just wants to be a kid. We have grown to be a part of a community of EB butterflies that shows how resilient the human spirit can be. Even through all of the difficulties we face every day, pain, financial strain, bullying, I wouldn’t trade a moment I have had with my fragile girl. She is truly the most precious gift.
- Erica Price

My granddaughter was born 9 years ago with EB. I know how difficult it has been for my daughter, both emotionally and financially. In fact, when my granddaughter was first diagnosed, the insurer didn't even have a treatment code for EB. I wish more could be done for my granddaughter who handles her EB very well. My wish for my granddaughter is that the people she meets treat her kindly and with respect, and with the understanding we all deserve. I wish to thank debra of America for bringing the plight of those with EB to light, and hope every day that a cure can eventually be found.
- Michael Harris

Although I HATE EB and all it has done to my Jonah the last two weeks especially, I am overwhelmed (and sporadically in tears) over how incredibly loved we are. To know you guys are praying for him, thinking about him, asking how you can help... it's so good. His Kindergarten teacher, Ms. Pabon came over this afternoon, after teaching 11 other kids all morning, to visit with him and bring him audio books (and a cassette player because ours is in storage), Grandaddy Gerry brought us milkshakes and told him approximately 107 stories, his other Kindergarten teacher, Ms. Boone called tonight and let him chat her ear off for 20 minutes to break his monotony, and Mimi MaryKay came tonight with a stack of books to read to him (by flashlight because we had to be in the dark) and spent a long time entertaining both boys. So as much as I hate EB, I think about how much we might be missing out on if we weren't forced to slow down and let ourselves be loved. It's an important thing. To ask for help, to let people into your life, to be real with each other. To be vulnerable. I'm thankful for the hundreds (thousands?) who love and pray for us. And I'm thankful to know it. Fully.
- Patrice Crump Williams

debra of America is doing incredible work not only by helping children and adults with EB receive the best care possible and creating a community to support their family - but also by funding the ongoing research for a cure. It is by working with the best researchers in the Dermatology Department at Columbia University that I heard about EB for the first time. I could not believe that I had not before then. I immediately felt moved and decided to join debra of America’s Young Leadership Committee to raise awareness and make sure more people know about Epidermolysis Bullosa.
- Yanne Doucet (debra of America Young Leadership Committee)

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