In The Begining

Harley was diagnosed at 6 months with Cornelia De Lange syndrome. We didn’t know that there was anything wrong until her pediatrician sent us to a geneticist when Harley was that age. The doctor did not give us a name on what she thought was wrong with Harley but when we learned what it was called I went to the library and did research on the syndrome. What I found petrified me as they were saying and also the doctor said that there was no chance for her. In the medical books there was only about 3 sentences about CDLS as we know it and there was no survival rate. That is when we went online knowing there had to be hope somewhere. That is when we found Amanda’s Room, and also the foundation.

            What a godsend the foundation is/was. They gave us hope and a lot of information and told us not to rely on what the medical books say as they really had no current information on the syndrome. With the foundation ( cdlsusa.org ) we found a whole family filled with doctors and families that understood what we were going through. After loosing our house in NJ and moved to NY I found through her now pediatrician, (I would not trade him for the world) Dr Pupo, (that is not what Harley calls him but I think you can figure it out) found us a world of doctors in Westchester Medical Center that although they didnt know that much about CDLS were willing to learn with us about  the syndrome and how to treat all the little things (ok some are big) that go along with it.

                     So when Harley was born on October 18th 1997 we were in for a big suprise from this little 5lb 1oz, 17 3/4 inch little girl. Perfect in every way and I would not trade her in for the world.