4-4-65 to 1-8-89
Your listening to "Ben" by Michael Jackson, Danny's favorite song.
By Karen Burger
It was very difficult back then because there was no help at all. So I had to learn things on my own.
I searched and wrote hospitals all over the US in search of information and there just wasn't much. Most just explained the disease and that there was no treatment.
At six weeks of age the Doctors said there was nothing that could be done for him and if I wanted they would released him to my care. They said he would only live a very short time. Boy were they wrong. He was 6lbs 7oz at birth when I brought him home his weight was just over 4lbs.
I recently saw a Website of pictures Children with EB. I saw that all the babies were clothed. Dan was completely nude for the first two years of his life. He was kept on a decubicare pad with a soft piece of diaper just under his bottom to catch his stool. That was difficult. Cleaning him up some times was a real challenge. He was kept warm by draping a white sheet over his crib. A goose neck lamp was directed over the sheet at a safe distance to maintain his body temp. At first we kept him in strict isolation at home. We had a electric space heater which helped keep his room at body temp. I scrubbed, gowned, and wore a face mask when I entered his room. He was on decadron twice a day for the first two years until one day when I took him to the doctor and he realized he was still on it. I thought Dan was putting on weight because his cheeks were getting fat. The Doc had done a boo boo. He then started tapering him off. All his sores at this time were sprayed with decca spray which contained steroids to dry his sores.
Dan's hands were a problem from the start because of the damage he did to himself. I had to put booties over them because he did so much damage to his face and neck. By doing this it helped the webbing process. His fingers were almost completely webbed by the age of two.
*What was availible then?*
It seemed the Doctors wanted to treat EB like they do burn-patients. At least they always did this for Dan. I hated the Silvidene and mummy wraps for Dan. The dressings looked good right after they were done but in a short time everything turned a gray color. The worst part that he was unable to move. With this treatment, Dan became very down and unhappy so I went back to the telfa and handi-wrap ones which he was happy in because his movements were not restricted. It cut the air out and he was not in so much pain.
I know the handi-wrap bandages were not the best but I did what I had to ease his pain and suffering.
Dan had a lot of bouts with eye trouble. He would go to bed alright and when he awoke in the morning his eyes would be sore. The worst lasted three days. It was always both eyes. He did out grow the problem but I can't remember at what age.
Dan had stigmatism and had glasses but could not wear them because of the damage they did on his nose and to his ears.
Dan had barium swallows done looking for criss cross webbing. Although none was ever found, he did have a narrowing at the top of his esophagus. I was with Dan while they did the swallow to help keep him calm and cooperative.
Dan never had any. Let me tell you why I was never sorry that I didn't have Dan's fingers separated. When Dan was in Ann Arbor having some teeth out there was a young girl by the name of Jane Doe who had Dystrophic Epidermolysis Bullosa also having all her teeth out. She was about 10. This was when Dan was a teenager anyway. We went to the cafeteria with Jane Doe and her mother for lunch. I observed Jane's hands while she was eating. Her fingers were slightly curved and very stiff . She was unable to make a complete fist. She had a very difficult time using her fingers to do anything. Her mother had to assist her. She could barely hold her glass. Her fingers seemed to get in the way when she went to pick up things. Even though Dan's fingers were webbed he functioned better than she because he was not always bumping things like she did. He had no trouble holding a glass although it had to be a small one. Dan could not open a door with his hands but niether could she. Dan could print, use color pencils in coloring books, draw pictures, cut with little scissors, he built with lego blocks, built with an erector set, he could start the screws, he couldn't tighten them so we helped him with that. He cooked all the time. He could cut up such things as onions or whatever. Oddly, he never got tears from onions like most people.
The worst was when he was an infant. His skin was peeled starting at his waist down over his butt, down to his knees. It happened in his crib. He got caught in the bed rails. He had starting moving and I was not aware of it. I had a very hard time dealing with that. I thought I was going to loose my mind and I blamed myself. He suffered so much. Another time was when he fell from a rocking chair. Because he was unable to break his fall. He was skinned starting at the bridge of his nose down over his lips and to the bottom of his chin. He got bumped while in his electric wheel-chair with his hand on the control. He skinned part of his hand and down over his thumb. My daughter was with him on one of their trips up town when this happened and she did the right thing she pushed the skin back up over his thumb and brought him right home.
*What did he like to eat*
Here is one of Dan's favorite meats and how I prepared it and he had no trouble eating it.
Ham - The whole family liked this dinner and it became a favorite for all of us. I baked a good boneless lean ham in the oven with large bottle vernors, and 3/4 cup brown sugar for three hours at 325 degrees in the oven. This is how I prepared it for Dan. I took a slice, remove any fat or gristle. I ground it twice. I made a gravy from the juice off the ham. Making sure the gravy wasn't lumpy but if it was I put it through a strainer. I would pour it over the ham. This is how I prepared all his meats by grinding them up and putting gravy over them.
*Major Surgery ...due to not being circumcised*
Dan did have surgery. It is so involved that if you are interest in it, You can go and read about it at
Dan's Surgery Pages ).
I signed papers so they could photograph the whole operation for their medical information at Ann Arbor. They agreed not to show his face. When he did have the surgery he was never intubated. It was risky but necessary.
I agree with you, they are bad applied to the skin, but I think Dan being on liquid Decadron may have saved his life when he was born. Although I can't prove it. I know when he had blood transfusions that was the only thing that helped the severe rashes he got.
Dan did not tolerate shots. They were tried when he was a baby but the medication would shoot back out the needle site and he would develop a swollen spot the size of a very large egg. So after a few tries I never let them inject him again. In fact he never had any the rest of his life.
I am so dumbfounded that Dan lived so long with out having his throat dilated. It seems as though most have throat dilations now. I would never have allowed that to be done to Dan. It would have caused him to hemmorage to death.
Just using a tongue depressor caused his whole tongue to develope a large black blood blister. This happened twice. He could barely eat for days. Plus he would do a lot of choking on the loose skin because it sloughed off several times before healing. I never allowed any doctor to use one on him again.
I had a lot of bad experiences with doctors. Doctors don"t think like moms.
Dan's blisters came in crops in intervals along with the ones caused by trauma. With Dan everything stuck that touched his sores and it didn't take long, it was as if a person glued them on. It was very difficult getting him un stuck. It was very painfull and there was blood loss which sure didn't help his anemia. I handled the problem in this manner. I would cut whatever was stuck as close to the sore as possible. I cut up a lot of things over the years. Then I would take Q-tips or the back of a spoon and coat the material that was stuck with vasolene, rub it in gently and let it soak awhile. Then I would take tweezers and lift up a edge piece and work vasolene between the material and the sore and rub gently between the two working them apart. This took along time but it worked with little blood loss and there was little pain for Dan.
I know most, especially doctors frown on vasolene and plastic wrap but I swore by it in Dan's case. This type of dressing made it possible for him to live with much less pain. In fact, Dr. Pearson is the one that introduced me to this kind of dressings. He once told me they even greased X-ray sheets and put EB babies on them.
I know of one lady who had a daughter with a milder form than Dan and she used Gelform Powder on the blister after she broke them and bandaged with telfa. She said it really worked for her daughter but I tried it on Dan and the only benefit he got was it stopped the bleeding.
That is what it is perscribed for. It is a percription item.
Even telfa on Dan would stick, unless I put a thin coat of vasolene on them.
*What type of EB did Dan have?*
I know he had a challenging form. Probably Recessive Dystrophic Hallopeau-Simens. Dan had some non-healing sores that lasted his whole life and he never developed cancer.
*Meeting others with EB*
When Dan was first born I was told of a lady that had an eight month old baby with EB and they gave me her phone number. So I called her and when I did her baby had died. I felt just terrible and didn't know what to say. She said it was ok and she said this was her second child she had lost to EB.
I heard of a family here in Michigan that had a boy with the severe form of EB and he lived in the Mary Freebed Hospital in Grand Rapids, Michigan. I was making arrangements with the parents and the doctors to go and see him but he died before I got to meet him. He was only 9 years old.
Another time when Dan was in the hospital in Ann Arbor there was a new born baby there with EB. The doctors asked if I wanted to meet the parents and see the baby. Of course I said yes but again the baby died before I got to meet the parents and see the baby.
I guess it was GOD'S will it wasn't meant for me to meet these parents or kids.
*Dan lost his hearing...*
When he was 18 Dan lost his ability to hear, from the absorption of Micatracin Ointment through his sores. The doctors recommended the ointment. I didn't know hearing loss could be one of the side effects of Micatracin Ointment. I don't blame anyone. It was just one of those things but it really hurt because it could have been avoided. I did have trouble dealing with this problem. I know his hearing loss was very gradual because when he became totally deaf he had taught himself to read lips. When he looked at me he knew everything I said. That is why it took me so long to discover he had a hearing problem. He was fitted for hearing aids but refused to wear them because they confused him also they bothered his ears.
He still watched TV.
*What Dan liked and was able to do*.
Dan's sister's took turns walking with him up town or where ever. When he had his first niece and nephew they went in a wagon he pulled behind his electric wheelchair. Dan loved people and talking to them on his trips up-town. He went anyday it was possible. He knew all the prices in the grocery stores and loved to shop for things to cook for himself and others. He liked to go to the drug store, they had a fountain and they got cherry cokes or sundea's.
We took him fishing on the lake on very calm days. He loved the boat ride. We fixed him a small pole and he could reel in the tiny fish himself, we put the bait on his hook took and took the fish off his hook, we helped him reel in the bigger ones.
He had an aquarium and loved to feed and watch the fish. His favorite was a nute which was reddish in color and looked like a lizard. He collected match box cars. He liked to run remote controlled cars. He built with Lego blocks and an erector set. He liked to build plastic models but I caught him sniffing the glue (STINKER!!) so I had to buy a different type.
As webbed as his hands were he could print, color poster pictured with colored pencils. He drew pictures he could even cut with a small pair of scissors.
His favorite movie was Howard The Duck and on TV was The Brady Bunch. He watched these even after he was deaf.
Later, Dan had trouble breathing because of his anemia. He had to have a fan circulating the air around him at night. It helped that he wasn't active because exertion would have made his breathing even worse, I'm sure.
Dan had to take pain medication all the time for about the last ten years of his life. He was on Tylenol #3 4x a day. Dan passed away from septicemia. One of Eb's complications.
My mother has made quilts all her life for the family and has taught myself and my sisters how to make them. We have a great time when we get together and tie them off. My mother made one for Dan almost every year for Christmas and he really looked forward to them.
written by Karen Burger
~My motto~ ..."Yesterday is gone, tomorrow never comes so all I need to do is the best I can this day."