{"id":185,"date":"2011-01-23T04:46:09","date_gmt":"2011-01-22T19:46:09","guid":{"rendered":"http:\/\/blog.ebinfoworld.com\/?p=185"},"modified":"2012-05-10T06:53:52","modified_gmt":"2012-05-09T21:53:52","slug":"about-eddie-paul","status":"publish","type":"post","link":"https:\/\/blog.ebinfoworld.com\/?p=185","title":{"rendered":"About Eddie Paul"},"content":{"rendered":"

\"\"
\nBy Helen Kling<\/p>\n

We would like everyone who is affected by Recessive Dystrophic Epidermolysis Bullosa to know our son Eddie Paul.\u00a0 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.<\/p>\n

We already had a little girl who was almost three, when we were excited to find out that we were expecting again.\u00a0 On September 20, 1957 Eddie was born but things did not go as planned.\u00a0 He was born without the skin on his legs and feet and one finger.\u00a0\"\" He blistered easily to the touch, and in 1957 no one knew what was wrong with him.\u00a0 Finally two months later the doctors told us they thought it was EB.\u00a0 They also said he probably wouldn’t live very long.<\/p>\n

We brought him home and I learned how to bandage him.\u00a0 I learned very fast that I had to pick him up by supporting his bottom and chest rather than under his arms.\u00a0 It was hard raising Eddie because I had no information and it was all trial and error.\u00a0 I wish I had known more because I could have avoided so much suffering for him to go through.<\/p>\n

He couldn’t suck from a bottle because it blistered his tongue.\u00a0 So he learned to drink out of a cup when he was seven months old.\u00a0\u00a0 It was hard taking him anywhere because we had to explain to the public about his condition, even though no one understood.\u00a0 But we took him anyway because we felt everyone should know about EB.<\/p>\n

Our doctor had prescribed penicillin for both children just to ward off infection.\u00a0 We let them play and do almost everything that other children did including playing in the sandbox and dirt.<\/p>\n

\"\"

Ed with his daughter Melissa<\/p><\/div>\n

We knew some damage might occur but they would be better off emotionally.\u00a0\u00a0When Eddie asked to ride a bicycle, I felt bad but I had to say no because that would be too dangerous.\u00a0 I told him that as soon as he’s old enough I would teach him how to drive a car.<\/p>\n

As Eddie grew older he learned what he was able to do and what he couldn\u0012t.\u00a0 If he couldn\u0012t accomplish things normally he would find a way that he could.\u00a0 Actually he was a good inventor.\u00a0 He was active in school and enjoyed impersonating famous people.\u00a0 He liked to make people laugh and made a lot of friends.\u00a0 Our favorite impersonation he did was Elvis.<\/p>\n

Ed went to Kent Sate University and received a bachelor\u0012s degree in Telecommunications.\u00a0 He had various jobs including NBC, cable TV and Case Western Reserve University.\u00a0 His last job was with Rainbow Babies and Children’s Hospital of Cleveland .\u00a0 He was the producer of in-house programs on the Rainbow Channel.<\/p>\n

He met his wife Sandy and married in 1991.\u00a0 They had a daughter, Melissa, in 1995.<\/p>\n

Ed was diagnosed with metastasis squamous cell cancer in the summer of 2001 and found out it was terminal on 9\/11.\u00a0\u00a0 He suffered and told me it\u0012s quite painful and I told him that I understood, because what hurts him hurts me also.\u00a0 He fought a courageous battle but died October 4, 2001 at the age of 44.<\/p>\n

A plaque now hangs at the hospital where he worked with the motto,\u0014 Do just once what others say you can\u0012t do, and you will never pay attention to their limitations again.\u00a0 This is the way Ed lived his life and why he is a success story.<\/p>\n

\"\"

Ed with mom and dad<\/p><\/div>\n

We were very proud to be his parents.\u00a0 We will miss him but will always have him in our prayers and in our hearts.<\/p>\n","protected":false},"excerpt":{"rendered":"

By Helen Kling We would like everyone who is affected by Recessive Dystrophic Epidermolysis Bullosa to know our son Eddie Paul.\u00a0 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…<\/p>\n

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