My name is Dee Dee and I am the mother of two boys aged 8 and 5. My oldest has Escobar Syndrome. When I was pregnant with Elijah we were told that he had Fetal hydrops and he was given a 5% chance of survival. The doctors were baffled as to what was causing his symptoms but during my labor they decided that he had lethal Pena Shokeir Syndrome and that he would not survive the birth. After he was born it was determined instead that he had Arthrogryposis. We were told not to expect much, that he would probably never walk. Boy has he proved those doctors wrong. He was eventually diagnosed up in Seattle to have Escobar Syndrome. He is eight now and entering the third grade. Not only does he walk, he likes to break dance, climb, and play the computer. He does wear hearing aids which we found out recently that he needed. He kept testing different each time and it was determined that the bones in his middle ear are not shaped right. He is now reading as of this year, doing math & keeping up pretty well since the use of hearing aids. If you would like to contact me, my email is dharrington6@msn.com
The Harrington Family
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