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.

Gabriella's Story

In December 2009 my 5 year old daughter, Kirstynn, asked me what I wanted for Christmas. She said she was going to write it in her letter to God. I spent some time pondering what it was I wanted. The next day I explained to her that I wanted nothing. I had come to understand that everything I needed, I already had. God had already blessed me. I spent some time over the next couple of days thinking about what our family had been given. We had been chosen by God to have a living miracle. Her name is Gabriella Ellen Roddy. We now understand that every day with her is a gift . Her tomorrow is never a given. She is the inspiration in my life; she has restored my faith in God. We as, a family, want to share her story. We want others to understand why we gave her the chance at life. She beat the odds and continues to do so daily.

Back in November 2008 I can remember the exact day I found out I was expecting. I called my sister to find out that she had also just found out she was expecting. The joy of thinking how we would both have children that could grow up together, go to school together, and be best friends. Little did I know God had a different plan for us. In January 2009 during a routine ultrasound they found problems with Gabby's brain. The next couple of weeks were pretty crazy. Doctor after doctor asked if we still wanted to continue with our pregnancy. Finally my husband, John, stood up and explained this is our daughter. If and when God wants her, He can take her. So please don’t ask us again. Little did we know this would be the first of many fights for my daughter life. My husband always stood behind me, picking me up on all those days when I doubted and needed him most. I remember with each painful test that I went though that John was sitting next to me hold my hand praying with me. We were so numb and confused. Every doctor we talked to just kept telling us how the odds were against her. I can’t remember much from that time till about three weeks before she was born when a Dr. Painter came to our aid. He looked at us and told us, "Mr. & Mrs. Roddy, There is HOPE for Gabriella." He said that if we gave up hope who else woutd there be to fight for her? We left that day with a new understanding.

On July 2nd I went to the hospital to have Gabby, it was the most scared I have ever been in my life. I was so afraid of what was going to happen. I am so grateful that Dr. Eldberg was there and helped me deliver my Gabriella. When I finished pushing her out, I was so scared. All I wanted was to hear her cry. The whole OR was in silence. Then after about 30 seconds passed we all heard a faint cry. I started to cry happy tears, I could finally breath. They tried to whisk her off to the NICU, but Dr. Eldberg stopped them and made it clear that my only request was to hold my daughter, kiss her and tell her that I loved her. I truly wanted to make sure that she knew that I was there, and that no matter what happened that I loved her. After a couple of minutes, I handed her off to John. The tears were pouring down his face as he looked into her eyes. I saw him whisper to her that she had to make it, that we needed her, and that he loved her. Needless to say my strong little miracle was in the NICU for less than 24 hours.
On July 4th 2009, a short 48 hours after Gabby's birth, we got to take her home. We live almost 2 hours from the hospital so our other 4 children hadn't met Gabriella yet. So, as you can imagine when we walked in our home with her our kids started to cry. My son busted into tears, screaming "LOOK, LOOK, She is OK!" The pride that I saw in all of them was amazing. On July 4th every year our home is magical. We live next to a small creek with a tree filled line. At about 9:30 p.m. every 4th of July the whole tree line lights up with baby fire flies being born. It is something you can’t record, or take a picture of. You have to live in the moment to see it. As we all stood in our back yard that night I understood that God gave us that night to show us to live in the moment with Gabriella. My kids soon began to understand that not going to see fireworks that night was not really a big deal anymore. There baby sister was home, healthy, and ready to be loved. They have given up so much; this way as a family we can enjoy the little miracles in life.

In the 10months since then my daughter has had 2 brain surgeries, 4 eye surgeries, and been looked at by every doctor there is to be seen. Every time we leave an appointment I feel overjoyed. She was diagnosed with Walker Warburg Syndrome, a Muscle-Eye-Brain Disorder .She has daily struggles, lots of PT, OT, and Vision therapy. She gets sick very easy, and it takes her a lot longer to get better. Every doctor she sees is inspired by her. She has done everything they told us she'd never be able to do. I can say that I may not always know what's coming next or what tomorrow will bring. I don’t always have the answer or know where we will be as a family in the future. I know that my laundry dishes, and house may not always be perfect, but I am ok with that. It can wait till tomorrow. Gabriella and our other children are more important than the housework. My other children know that just because Gabriella needs us more doesn't mean that we love them any less. Gabriella has made us slow down take in every moment and cherish it. She has made us better parents, family, and friends. I now see we are the lucky ones. God chose us to be blessed with her. She has made my heart whole again, and restored my faith in God. Our family is not always picture perfect, but it is the most perfect family for me.