My Story

Hannah was born on November 5, 2004. She weighed 7lbs and 5ozs. I took her home from the hospital the very next day to go to my brother's wedding.  In December of 2004 she started have some reflux problems. So her doctor put her on two medications for her acid reflux. Then a couple months later (in the spring) she started wheezing a little and then we discovered that she also has asthma. We then got a nebulizer and that pretty much had taken care of her asthma. Occasionally we had to go to the doctor for really bad asthma attacks then she would go on steroids for a couple of days and then be fine. Months went by and she was developing normally until about September when she started pulling up on the furniture. I kept telling myself she is going to be running around soon. Well in December she got ear infection after ear infection and that is when I noticed that she wasn't walking around the furniture anymore. So in January they finally put tubes in her ears. After that I said that she is going to pick up and go anytime now. Well it was  two weeks after her surgery and she is not even attempting to try to pull up or walk. So I made an appointment to take her to her pediatrician. Everyone was saying that she is just being lazy she will do it when she wants. Well On February 10, 2006 I brought Hannah to her doctor, the doctor did her  exam on Hannah and she said give me a minute I will be right back. Well she went to call a neurologist to talk to him about Hannah. She finally came back in the office and said her legs feel a little like jello and she has no reflexes in her legs and a little in her arms.  My heart sank. There can't be anything wrong with Hannah. So I want to send you to get some labs done at the hospital. Then I asked her what do you think it might be and what are you testing for. She was testing to see if her bones are deteriorating which is a CPK also she did a gene test. I asked why are you doing a gene test? She said to test if she has Spinal Muscular Atrophy. I'm like what? What is that? She basically said it is a muscle disease in her legs right now. I panicked and started crying. The doctor and nurse were in the room with me crying. Before I left the doctor told me that the CPK test will come back in a day or so but the gene test would be about four to five weeks  I finally got calmed down and then went over to the hospital. I called my husband on the way and he immediately left work and met me at the hospital and so did my mom. Her CPK test came back and her muscles are not deteriorating. The whole four weeks was so depressing, finally on Friday March 3, 2006 the doctor called me with the results. She said that the gene test came back and she has Spinal Muscular Atrophy Type 2.