By Helen Kling
We would like everyone who is affected by Recessive Dystrophic Epidermolysis Bullosa to know our son Eddie Paul. This is very much a success story, and hope that by sharing this, it will give others inspiration as he gave to all who knew him.
We already had a little girl who was almost three, when we were excited to find out that we were expecting again. On September 20, 1957 Eddie was born but things did not go as planned. He was born without the skin on his legs and feet and one finger. He blistered easily to the touch, and in 1957 no one knew what was wrong with him. Finally two months later the doctors told us they thought it was EB. They also said he probably wouldn’t live very long.
We brought him home and I learned how to bandage him. I learned very fast that I had to pick him up by supporting his bottom and chest rather than under his arms. It was hard raising Eddie because I had no information and it was all trial and error. I wish I had known more because I could have avoided so much suffering for him to go through.
He couldn’t suck from a bottle because it blistered his tongue. So he learned to drink out of a cup when he was seven months old. It was hard taking him anywhere because we had to explain to the public about his condition, even though no one understood. But we took him anyway because we felt everyone should know about EB.
Our doctor had prescribed penicillin for both children just to ward off infection. We let them play and do almost everything that other children did including playing in the sandbox and dirt.
We knew some damage might occur but they would be better off emotionally. When Eddie asked to ride a bicycle, I felt bad but I had to say no because that would be too dangerous. I told him that as soon as he’s old enough I would teach him how to drive a car.
As Eddie grew older he learned what he was able to do and what he couldnt. If he couldnt accomplish things normally he would find a way that he could. Actually he was a good inventor. He was active in school and enjoyed impersonating famous people. He liked to make people laugh and made a lot of friends. Our