Dr. Serino and Gabriella's Story

I remember the First time we meet Dr. Serino. It was at Childrens Hospital during our first stay there. Gabriella was only two months old. He came into the room, examined Gabriella, and then asked us our history. At that time I did not really like the man. He was very "pushy" and did not open his ears to listing to a word we were saying. Over the next couple of months we had monthly appointments with him. He sent for lots of blood work every time, with no results. John and I personally began to hate the man. Looking back I think the main reason we did not like him was because he knew that Gabby had WWS. As parents you never want to admit that your child has a horrible disease. During our second apt he told us that if Gabriella had WWS that she would be dead with in a year, and that we needed to see all the signs because they were there. I left that day pissed off!! How dare him, count my child out on her life already. How dare him tell me something like that before he even had the results back. Three weeks later he called telling me that her test came back negative. I was on cloud nine. I actually laughed at him on the phone. ( I know not very mature.) He started doing allot of researching on WWS & Muscle Eye Brain Disease. He contacted us two months ago to tell me there were actually 8 versions of MEB, and that he now wanted to check for the other 7. I was devastated. I could not even bare the thought that my daughter had this horrible disease. On our way home from the last apt John and I cried. I think we finally had come to accept that she could have it. It was a possibility. On April 23, 2010 I got the phone call at 3:45 p.m. No matter how many times I tried to prepare myself for this phone call, It still sucked the life out of me. Broke my heart, and I wanted to give up. The weirdest thing happened. No matter how crappy I had treated Dr. Serino he was the most nice he had ever been. He informed me that she has the most rare version of MEB. Its so rare that they don't have hardly any research on it. He told me that she has the possibility to out live us! What!?! He told me that she is the rare baby, that defies all the odds, that what ever we were doing keep doing it. He does not have the answer why she is doing what she is doing. He actually talked to me on a parent level and explained that she is something she is not to be. A miracle. I spent that night crying mostly. I had to go to the mall to pick up some DVDS for Gabby. I was to meet a lady at the main doors at 6:00.(I am pleased to say the lady and I got doors messed up and she did not see me that way) I stood there crying for almost 20 minutes,(it was a Friday night and every teenager was there staring at me) then cried the whole way home. Then cried to my dad for almost 30 minutes. I don't know how as a parent you can feel OK with this. I don't know how to prepare myself for if the worst will happen. I feel as if my daughter got cheated at life, it was like they handed her a death sentence. I still don't know how to deal with it. I block it out. I spent the next day picking myself back up. It hit me, all at once. God heard my prayers, he heard every ones prayers. He had to of, because she is still here. I cant spend my days feeling sorry for myself or her. I have to push harder, work harder, and just maybe she will keep beating the odds. Since that day we have got Gabby's PT & OT pushed up two 2 times a week, I also decided that she is my inspiration. I want her story to be heard. To show people that I am not going to give up. I will fight for her with every last breath I have in my body. She is moving forward. So will we.