I am writing to you in honor of a beautiful butterfly.
My daughter Grace Catherine Peshkur was born on March 29, 2002. From the minute she came into the world, life would be a roller coaster of emotions. Confused and concerned about the future, I listened as the doctors told me that Grace would have to be transferred to another hospital while I remained. I was devastated and heartbroken. Grace was born with denuded skin on her feet, hands and mouth. She was unable to take a bottle and cried constantly. Whisked away from me and sent to another hospital, I was left with an empty feeling in my heart. I am her mother and I need to protect her. The next two weeks, I would quickly learn words I had never heard before…Epidermolysis Bullosa! These words forever instill anger and pain in my heart.
Grace lived each day with pain and constant itch. There were many infections and frequent hospitalizations. At the age of two, she finally took her first steps. However the new experience would be short-lived. Grace’s disease progressed over the years and we had many fearful moments. We tried it all; skin grafts, G-tubes, whirlpool baths, medication, etc. We tried all the latest dressings and creams. Grace was in a wheelchair and could not do much for herself due to contractures in her hands and feet. She got angry and frustrated and so did I. We were blessed with wonderful doctors in Cincinnati who walked the walk with us. They were frustrated and angry at this disease too! We had a gamut of nurses but finally found an amazing one who became family. Grace had Recessive Dystrophic and to add to that, she had one of the worst cases they had ever seen.
Through her constant battle for life, Grace made me feel more love than I ever felt before. When Grace smiled, she touched hearts. Her eyes looked deep into your soul. You were forever changed for the better after meeting her. Her challenging life also included people’s stares, constant questions and even cruel remarks. Finding a support group of family and friends who accepted us and understood our daily struggle gave us the courage and strength we needed to continue to fight this disease. They showed love when Grace would be stuck to her clothes, would get sick because of blisters in her esophagus, or would scream in pain going to the bathroom. They would come together when we would have to be on the next flight to Ohio for Grace to have emergency surgery. They even brought Thanksgiving to us when Grace was too weak and sick to travel.
We learned to adjust our lives and make the best of small moments. Pizza in bed was her favorite and holidays were celebrated wherever we were. Our big day was her birthday because it was another year we won over this disease. Imagine living life in agony constantly. Imagine excruciating pain, even performing the simple tasks of daily life. EB is a deadly disease and needs to be stopped! My life was changed forever on March 29 because I was blessed with a beautiful angel. I was lucky to be able to live the journey with her and fight for what she needed. Grace lived and loved life. She went to school, enjoyed her swing, was involved in Girl Scouts and went on many vacations to her favorite place, Disney. These were all modified to her needs but created the smiles which I hold dear to my heart.
On May 17th 2009 my life once again changed forever. Grace suffered a heart attack and passed away while lying next to me. This was a total shock and is the hardest pain to face. I was her mommy and once again could not save my baby. Grace is an angel and lived her life to the fullest. Epidermolysis Bullosa is the cruelest disease I know and I hate it with all I have. It took my little girl away from me when she was only 7 years old. I made a promise to her that I would continue to fight for all her butterfly friends. My vow is to prevent other mothers from feeling this intense pain. Life is so precious and I am glad we made memories with Grace. Those are what keep me going. Grace is now finally pain free and not scratching her constant itch. Why do beautiful children need to suffer? Please educate people and help raise money to stop the suffering and allow these children to celebrate their birthday without worry that this will be their last. Please keep my angel in mind. She allowed her story to be shared so that the suffering would stop. I will never lose hope that a cure will be found.