Madison Maureen Ramirez was born on December 27, 2005. She came into this world eight weeks early and gave us all a little scare! But true to her personality, she was quite stubborn! She was pretty healthy for a 3lb 9oz baby! She was in the NICU for 5 weeks to grow and get big enough to come home. She came home at a mere 4lbs! Over the next two years she was fairly healthy. We had one bout of pneumonia and all the other junk babies get. But at 2 Madison's physical capabilities were lacking. We had been attributing her slow gross motor skills to her being a preemie. Doctors said she would catch up by the age of two. Well at two I went looking for answers. After going to one well known hospital, the doctor there spent all of 15 minutes and diagnosed her with cerebral palsy. She said that many preemies end up being diagnosed with even a slight case. She said Madi would be fine. Well, needless to say I wasn't very happy about that and didn't agree. How could she decide that in 15 minutes? So I went looking elsewhere. A good friend of mine suggested that I go see the Shriners that were coming in town. So I did. They took pictures of Madi and wrote down some health information and said they would let me know if she would be accepted. A few weeks went by and she was accepted and we headed to Chicago for our first visit to Shriner's. The doctors we saw were amazing! They each spent as much time as we needed and asked all the right questions. The neurologist, Dr. Silver, told us about this disease that he wanted to have her tested for. They took 7 viles of blood from her poor little body! It was called Spinal Muscular Atrophy. Just to rule it out, he said. So we went home. I looked it up but didn't read too much and kind of blew it off. It wasn't until 5-6 weeks later that the doctor called us back. It was a Sunday afternoon in April. We were playing outside with the kids when he called and asked me to get Tom and go sit somewhere private so we could talk. My stomach was in knots. I had no idea what he was about to tell us! He went on to give us the worst news of our life! Our daughter was diagnosed a Type II child with Spinal muscular atrophy! He went on to make sure we knew how serious and life threatening this was. It was a disease with NO cure and degenerative. She would progressively get worse! He made sure we understood that Madi would never walk, never crawl more than she was at that point, and she would live a shortened life! We were devastated! I handed the phone to Tom and went to the bathroom to vomit! It didn't seem real. The next few weeks were awful! We both cried ourselves to sleep every night! We held her with all our might and wanted to never let go! After the first stage of depression we both decided that she wasn't going to be the typical Type II and we would do everything in our power to make her walk and be normal. I could go on forever about all the struggles we have faced and all the lessons we have learned along the way but the best part is where we are today! Madi has been re classified a Type III!!!!!!!!!!!!!! She walks with a walker, sometimes without, and lives life to its fullest! She is just as stubborn as the day she was born and is so independent. She wants to do everything her sisters do and more! Madi is just Madi and really doesn't get the fact that she is handicapped! She wants to flip, jump, run, do backwalkovers, cartwheels, and everything else little girls do! We never tell her she can't, I just help her do them the Madi way! Madi is so happy and has such a fun outgoing personality. She is kind and sweet, funny and ornery! She lights up everyone around her every day! We are so blessed to have such a special girl and she is our inspiration every day! If everyone had a little Madi in them this world would be a better place!
