Nicky's EB Info World ~ Feaured EB patient

We learned so much the first year of Trevor’s life. Including the fact that he had the Junctional Herlitz form of E.B. This is one of the lethal forms of Epidermolysis Bullosa. Most of the little babies only live a few months. We had DNA testing done when Trevor was nine months old. We got it back a few months later. We had always been suspicious of this form. By the time we had the DNA testing done, Trevor had a G-tube and a Trach.

Trevor did pretty well the first few months of his life. About nine weeks after he was born, he became severely dehydrated. His electrolytes are a something we really have to keep our eyes on. He also suffered from any infections. He was not gaining weight. A decision was made to put in a G-tube.

Trevor had a very raspy cry at birth. This is a very common sign with Junctional Herlitz. He started having severe problems breathing and strider. We decided after much contemplation that a Trach was needed. It was a wonderful decision. I remember setting in the hospital room listen to him gasp for air and I knew that was not the way I wanted him to die. I wanted his death to be peaceful. He was running fevers on I.V. antibiotics at the time, his future was very uncertain.

Trevor is now 4 years old. He is such a blessing to us. We have been so blessed. We have been through many things with our little trooper. We have spent many hours at the hospital. He has done really well for the last year and a half. We have been managing his care from our home and have kept his blood count up, his electrolytes balanced and have only had to use oral antibiotics.

It is so hard to write down how much my children mean to me. My children are such a blessing to me. Trevor has an older brother that is E.B. free. He is 7 years old. Tyler is such an awesome kid. He has always been so loving and helpful to his baby brother. He has never taken out his frustrations on Trevor. He has had to settle for less sometimes because of the time and care we have to spend on Trevor. But I have never heard him complain. He helps me so much. And we make a deal that he tells me when he needs attention too.

Tyler and Trevor have taught our family so much about life, so much about love. Trevor has taught me how important life is. How precious life is. How much most of us take life for granted. I am truly changed because of my children. I was very angry about the amount of pain Trevor suffered and how this could happen. How a child could have this terrible disease? I was very angry with God. This is just part of the grieving process. It takes time but with God’s help, it does pass. Being positive and happy is really a choice. I finally got to the point that I thought, Life isn’t fair but I am going to be happy and positive and thankful for all I do have. I bought a card once that said, “Clouds in our lives are sent many times to bring showers of blessings.” Trevor has seen many clouds but he has been such a blessing to us.

We have also been blessed that we have a wonderful pediatrician. His name is Dr. J.W. Hendricks, in Tulsa , Oklahoma . He has been such a wonderful friend and doctor for us and for Trevor. I thank the Lord everyday for him. He helped us through a lot of really terrible time. He was so honest on all that way going on with Trevor, yet he always remained hopeful. We have been blessed in this area, many parents I have talked with do not have doctors that will take the time and talk through all options and decisions. We have always received great care from most of the medical community, but we have always been willing to let them know how to care for Trevor. We have had to become Trevor’s advocate. Dr. Hendricks has helped so much in this area. He has cleared the way many times, in dealing with new specialist. He has also given me the confidence to say no, when it is not in Trevor’s best interest. This is so important for parents to do with a child with E.B., because this isn’t a common disease. Many medical personnel have never dealt with it. Patience is a very good quality to have.

We started going back to church when Trevor was about a year old. This has helped our family so much. Our church offers so much love and support to us. Their prayers have been such a blessing. I would truly recommend having some kind of support like this for other parents of children with E.B. Every parent and every special needs child needs a place to feel comfortable in and to feel loved by others.

My main suggestions to new parents of children with E.B. would be to research as much as you can about your child’s type and always keep researching for new information. Get on the internet and find other parents or people with E.B. Second, would be to find a good pediatrician. One that will help your family through any bad times and help with suggestions.

Third, would be to find good support groups. Whether that is on the internet or by phone or in person. Also, take life one day at a time. Don’t focus so much on tomorrow. Think positively and concentrate on the good times. My attitude got so much better when I began to focus on the good times and less on the “what could happen”. I didn’t realize that we had done this until a pain specialist doctor asked us, “what we pictured for Trevor’s future.” We both looked at each other. We had not thought about in a long time. We basically told her, “that we take one day at a time and try to enjoy the time we get to have with Trevor.”

My main thought on Epidermolysis Bullosa Junctional Herlitz, is that it doesn’t always mean a death sentence. That God may have other plans for their life. Our main focus has been on Trevor’s comfort. Even in the bad times. We have tried to never give up. So, no matter what the diagnosis, always have hope and try to make the children as comfortable as possible. I have watched many people, whose children have Herlitz, give up and with hold treatment of their dehydration or anemia. I truly believe these are comfort issues. I also feel, that these measures will eliminate any guilt issues after death. I also strongly believe in the use of morphine on these little ones. It was the best decision we ever made and I will now that we had started it immediately after Trevor was born.

I hope I have done justice to Trevor’s life story. He is such a wonderful little man. We love and enjoy him everyday. Are there bad days? Yes. But I wouldn’t trade them for the world. Tyler and Trevor have taught me so much about life and about love. I wish all to find the happiness I have know and the blessings I have received. God Bless.

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Last Updated: May 10, 2004