Name: Debby Lilly

Birthday: April 5, 1953

Location: Churchville, Virginia, USA

Family members with EB: Husband Roy, EB Simplex, Daughter Sarah, EB Simplex, Grandson Andrew almost 2 years old, RDEB.

Biography... in her own words:
When I met Roy Lilly in 1974, I was just coming out of a horrible and traumatic marriage. I was 20 years old and I had just done the one thing I promised myself I would never do - go back to my parents house. I got a job at Westinghouse to try and make a life for myself and my daughter, Paige. That is where I met this funny little guy who changed my life. He was warm and caring and he made me laugh, something I thought I had forgotten how to do. Two years later, we got married. When I first met him, I noticed that he walked slowly and sometimes had a slight limp but it just didn't seem important at the time. After a while, he finally told me that he got blisters on his feet and that it was because of a condition he inherited from his father. My dad gets blisters if he wears colored socks so again I thought - big deal. It was until he actually showed me his feet that I understood how big a deal it was. However, by then, I was madly in love with the goofy little guy. When we got married, we both wanted more children very much. We didn't think much about the blisters because it just didn't seem to happen very often and we just hoped for the best. After six miscarriages, we had Becky. While I was pregnant, wise guy said he hoped we had a little girl who looked like me and had his personality (he didn't think he would survive two people with my temper). What he got was a little girl who looked just like him and had MY personality. Ha that will teach him to be careful what he wishes for! Becky was perfect in every way. Sometimes, I would look at her and wonder how I had gotten so lucky. She was so strong and smart and healthy, we put all thoughts of EB out of our minds. She sat up at 5 months and walked at 8. From the first step on, she ran wherever she went. And climb, good grief, nothing was safe. I have always wanted a ton of kids so no one was surprised when I turned up pregnant at my six weeks checkup. Of course, the doctor read us the riot act but I didn't care, I was going to have another baby! I made it to 7 months and then in a flash it was all over. The problem is my babies have very short umbilical cords and the weight of the baby causes it to pull the cord loose. There is nothing that can be done once it starts. But I didn't give up hope, I had Becky and I was sure there would be more. My mother in law had a fit when she found out I was pregnant after Becky and one day she made me so mad that I said I would be pregnant again on Becky's first birthday if I wanted to. Remember what I said about being careful what you wish for? Well, I was pregnant on Becky's birthday! Sarah was born August 1! Roy was out on strike and money was tight but he had finally gotten his wish - a girl who looked like me and had his personality. Unfortunately, he had forgotten what a little brat he was as a child! Only one thing had us concerned when Sarah was born - she had a blister on her finger. The doctor laughed it off saying he had seen it many times before and that she was destined to be a thumb-sucker. We checked her feet and they looked fine so again thoughts of EB were put away. Then when she was 4 days old I got her up one morning and noticed blood on her pajama feet. I took them off and the tops of her feet were covered with blisters. It was only the beginning. Roy was devastated. He blamed himself and became determined to find a way to cure her. It began a 12 year search for a doctor who could help. We went through thousands of dollars and so many doctors that I lost count. She became a guinea pig for every crack pot who thought he could make a name for himself. The "cures" ranged from massive doses of vitamin E that almost cost her her life to a plan to burn the skin off of her feet with a laser, the idea being that the new skin would grow in blister free. When she was 12, she said she had had enough and I supported her decision. Roy still believed that all we had to do was find the right doctor but I had finally faced the truth - there was no cure. Sarah never let her feet stop her from what she wanted to do. We are a family of jocks and she was determined to be a part of it. I wanted so much to say no and not let her but she taught me that there was no point in keeping her alive if we weren't going to let her live. She played softball, basketball, ran track and cross country. The price she paid was sometimes more than I could stand but I refused to let her see. Whatever she wanted to try, I supported her even if it meant helping her change her shoes and socks at half time because the sound of the blood squishing in her shoes was upsetting the other players. I learned so much about the power of the human spirit from that little girl. Life went on. The girls grew up and blisters were just a little part of our lives. Paige was the first to give us a grandchild and he was a beautiful little boy, Brian Lee. This was quite a thrill for me as I was one of three girls and had three girls myself. A BOY! Wow! Then Becky called to say she was pregnant. She and her husband were stationed at Fort Riley Kansas so I was concerned that we wouldn't get to see much of our new grandchild. When we went out to see them in November, she had an ultrasound done and he was very obviously a little boy. I feel in love right then and there and was determined to be there when he was born. When the call came that Becky was really in labor, I started calling the airport trying to get a flight. That's when I found out that there was a women's basketball tournament going on and it was impossible to fly into the entire state of Kansas! In steps my white knight, Roy, who volunteered to drive me straight through to Kansas -1105 miles one way (now can you see why I still love the old grump!). We stopped about half way and were told there was something wrong with Andrew's skin. Roy and I both knew right then what it was but we had no idea the extent of the problem. We had always been told that it just involved the hands and feet. Well, we made it to Irwin Army hospital at 4AM on the 28th and there he was, swaddled and sleeping. I didn't have my glasses on so I couldn't see what everybody was making such a fuss about. It wasn't until later that morning during a bandage change that I got my first lesson in what Bullosa was really all about. It was overwhelming. He was missing all of the skin from his left foot, right hand and right thigh. There were blisters and scabs on his face and stomach. His little mouth was a disaster area. That day became the first day of a long struggle to find a way to make a life for that precious little boy. He didn't want to suck and the doctor recommended that we don't try to make him eat. When I asked if he meant for us to let him starve the doctor's answer - "If you love him you will" - was almost more than I could stand. But that man didn't know me very well. It just made me more determined. We were told all about malnutrition induced mental retardation and that was all it took. We went out and bought droppers and fed him by hand. He ate like a starving man, downing 6 ounces of formula in no time flat. That was when I made Andrew a promise, that if he wouldn't give up, neither would I. When Andrew was 5 days old we all went to Denver to see an EB SPECIALIST. We had to strip him naked and they took pictures and told us what we already knew - this was for life and there was no cure. I watched my little girl that I had tried so hard to bring into this world face the facts of her son's life. She cried and then raised her head and I saw the look on her face. She wasn't going to give up either! I guess it was easier for us having some experience with EB. Andrew's father and his parents just couldn't seem to get a handle on what this all meant. Like so many marriages that involved children with special needs, this one was doomed from the moment the doctor said the words "No cure". Mothers don't have the luxury of saying I can't deal with this. So in October we became a household where EBers actually outnumbered non-EBers. Life became a daily battle to deal with whatever new thing EB threw at us. But it was so worth it to watch that delightful little boy grow and thrive. At work I had access to a computer so I decided to try to find some help on the Internet. I found the DebRA website and while it had some interesting facts, it didn't seem to help much in the day to day life of raising an EB child. I checked back every now and then but didn't seem to find much. Then one day in April, I found a website owned by a woman named Silvia who had a little boy named Nicky who had EB. When I saw the first picture of that beautiful little boy, I touched the screen and called him my little Pooh Bear. I was hooked! Madly in love with a little boy I thought I would never get to know. I signed the guest book and thought well that's that, but at least I can go and visit the website everyday and be reassured that there are others out there. I was surprised and confused when I got an email from this Silvia about walking with Sorrow. Boy, I wrote her back in a heartbeat letting her know there was no sorrow connected with Andrew, I would not allow it! She wrote back letting me know that she had sent the poem looking for my reaction. She invited me to join a group of 8 other women who were raising EB children. That was the day everything changed. We were not alone anymore! I don't know if Silvia will ever realize how much she means to me and my family. I just know that I thank God for her everyday. I have met so many wonderful people that have become such a precious part of my life. One very special person was Dana Marquardt. Well, here we are. Back in October, Becky decided that it was time to go out on her own. She and Andrew live about 20 minutes away. Some days I miss him so much it hurts but I know it is best for them to have their own lives. Sarah is a junior in college and living on her own so it is just Roy and me here. I have to admit it is kind of nice to come home after a day of dealing with the world to a little peace and quiet. And of course we have both the boys on the weekends. At first, I just couldn't understand. Why me? I still don't know why but I do know that God has given me a task to tell the world about EB and move people to work for a cure. I believe that a cure is just a heartbeat away. I believe that with all my heart and I will not rest until it becomes a reality. I don't know for sure if this is what Silvia wanted or expected when she asked me to be EB mom for January but it is the story of my life and that is the best I can do. Yes there were non-EB related events in my life but somehow they just don't seem to be as important as I thought they were at the time. EB is a force to be dealt with every minute of everyday and that is the true tragedy of it all. There is never a moment when the person with EB or the people who love them can just forget and act like life is "normal". But we go on because that is what we must do. We make jokes and laugh and learn from one another and we go on. We cry and pray and pray some more and we go on. We believe and we go on. And we go on.

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