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This May my husband and I were blessed with the birth of our first born child, Keegan. He was 6 pounds and 13 ounces and adorable. I have to say that I did have a "motherly instinct" that something was different about him, but the doctors all told us he was just fine. Two days later our pediatrician was doing a routine visit when he sat down in our hospital room and began to tell us that he would like Keegan to see a genetic specialist once we leave the hospital. He said not to be alarmed, but that he wanted to make certain his skin and such were ok.

Long story short, after we met with a less than personable genetics, she confirmed just by looking at him, that Keegan had E.D. We later had the lab work done to learn that Keegan's case was a mutation. It's been almost 9 months now and we are in a far better place than we were when we first got the news. Keegan is cognitively strong and his personality cannot be matched.

Having E.D. is just one characteristic of who he is and we are learning how to handle its challenges on a daily basis. The NFED makes us feel like we have a connection to others living similar lives. We know that Keegan will enjoy meeting and growing with many other children just like him.

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