  Born January 6, 2000 Spinal Muscular Atrophy Type 1 On the way to the hospital I had my first serious contraction and when we got to the hospital it was around midnight so we had to go through the emergency entrance. The nurse on duty asked us if I wanted a wheel chair and Jim proudly told her no, that I needed to walk to help the labor along. By the time we reached the maternity ward the nurse took one look at me and said I hope you wanted to go natural because you are just about ready to start pushing. I was 8 1/2 centimeters and moving extremely fast and by the time Jim called our parents, returned to the room I was ready to start pushing. Within 45 minutes we had our precious baby GIRL wow what a surprise that was after believing that she was a he all along. Samantha Giovanna Dodaro was born January 6, 2000 at 1:15 am right on her due date. The doctor did all the normal testing and she scored a 8 1/2 on her apgar. A beautiful healthy daughter you have here the doctor told us and handed Samantha over to Jim and I. Due to some minor complications that I had we stayed in the hospital for three days but on the fourth day we arrived at our home with our beautiful daughter. The next 8 weeks we marveled over how beautiful she was and how strong she seemed to be. She was holding her head up by herself and just seemed to be very content. It was her 2-month checkup that we showed some concern to the doctor that she did not seem to be moving as much as we thought she should be. The doctor told us that all babies are different and that we were just being over concerned first time parents. By twelve weeks the concern was growing, by then she seemed to not be holding her head up any longer and she was just very placid. We had a scheduled doctor appointment for her 4-month checkup and we decided that if at that appointment the doctor was not concerned then we would get a second opinion. Well to our surprise her doctor agreed with us and made a few phone calls to the specialist at Loma Linda Children's Hospital. After some lengthy conversations our doctor sent us over to the hospital to be checked in and run several test on Samantha. The neurologist came in and took a look at Samantha then looked over the couple of test they had ran and called us out of the room to let us know that he was 95 percent positive that our daughter had Spinal Muscular Atrophy. Well our first response was is this very serious and what kind of treatment do we need to look at to get rid of it. He looked at us and explained that it was a genetic disease and that there was no treatment nor was there a cure. The next sentence was definitely the hardest blow and that was when he informed us that she probably had less than 2 years to live. We were devastated and speechless to say the least but one thing for sure we both knew that there must be some mistake and that he had to be wrong. Jim went to his office and got on his computer and immediately started researching the disease. We had never heard of the disease nor did we have any kind of neurological diseases that ran in either of our families. By the time Jim returned to the hospital he was sure that there was some other explanation. Maybe it was the immunizations that we had given her at two months because that is when things started to change. The doctor released us the next day after running a genetic blood test to determine whether or not she had SMA. After many days of crying and asking why our baby we decided to start researching until we could find an answer or at least try to understand what SMA was. We discovered a wonderful web sit called Families of Spinal Muscular Atrophy and we learned so much about SMA that we were pretty certain that was what our Samantha had. The next three weeks were the longest three weeks of our lives. The day finally came June 14, 2000 to meet with the doctor and go over the blood test results and find out if Samantha had SMA or not. By the time we arrived at the doctors office we were holding out on that bit of hope that maybe there was a mistake but when the doctor came in and told us the test was positive we knew there was no mistake. As the doctor explained that there was no treatment nor was there a cure we knew at that moment that we would be faced with the biggest challenge of our lives. He explained to us that it was time to take our daughter home and enjoy everyday that we had with her because she would probably not live to see her 2nd birthday. We very politely smiled and said this is our daughter you are talking about and we will fight every single day of her life to see her out live her prognosis. When we got home that day we started taking turns on the computer researching special diets, current drug trials and every other thing that we thought would help our little girl grow up to be a big girl.      |