Guest Post by Doreen Mcgettigan

It was about this time of the year. I sat on the front porch with my bonus daughter Heather and rubbed her eight months pregnant belly.I created one thousand reasons in my mind why the baby boy was not kicking like a little football player.Kyle Christopher was born on a warm, early fall day. He was transferred to the Children's Hospital of Philadelphia.My daughter, Joan and, frantically searched for a christening outfit. Kyle was baptized and dedicated that day. One minister forgot his oil.The skinny, tiny boy was connected to monitors and a feeding tube. It was difficult with all the apparatus, I had to hold him. To me he was perfect. He was diagnosed with Smith-Lemli-Opitz Syndrome. Yeah, we never heard of it either. It is extremely rare. Rare like less than 200 diagnosed. http://emedicine.medscape.com/article/949125The doctors were not optimistic. We learned everything we could about the syndrome. We learned CPR and feeding tube care.It was likely Kyle would never walk or talk. Four families and countless friends came together to offer their support for these young parents. Matt and Heather were simply amazing. I will never forget the first smile Kyle blessed me with. Against all odds Kyle grew, slowly.He attended Easter Seals. I could write a book on the love I have for this organization and the extra ordinary love the teachers have for our worldsmost precious angles. They taught Kyle sign language. We learned to sign. We taught Kyle's baby brother and his cousins to sign. His feeding tube was finally removed; he was able to eat real food. I will never forget the time I was feeding Kyle spagettios. I thought he was finished.I reached for the napkin to wipe his face and he tapped his little pointer fingers together. [the sign for more.] His first word for me was more.I cried. On September 15th we will celebrate fourteen years with Kyle.