Alexander’s Story
Alexander William Davis was born on March 31, 2008. He was sent home from the hospital two days later, healthy and happy. Everything was going well until he was seven months old. We then noticed he had stopped rolling, was not sitting up, had trouble holding his head up, and would not bear weight through his legs. We took him to his pediatrician, who agreed that something was not quite right, and sent us to a Neurologist, as well as referred us to Indiana First Steps for therapy. The first appointment with the Neurologist went pretty well. She decided to do some blood work and an MRI. Everything came back normal, and we were told he was probably just behind and would catch back up. He had started Physical and Occupational Therapy with First Steps, and after three months of him not getting better, we decided it was time to go back to the Neurologist. Since he had not gotten much better, she mentioned that it could be a couple of things (SMA being one of them), and would do an EMG (muscle test) to see if we could narrow it down. During the waiting process, we started researching SMA and were heartbroken at what we read. We read all the symptoms online, and only half of them fit Alexander at that time. We couldn’t even imagine that our child would have to go through something like that. The EMG came back abnormal, and she wanted to do a blood test to confirm an SMA diagnosis. We had to wait another 4 to 6 weeks for the test result to come back. We got a call from the Neurologist five weeks later, and were asked to go in the next day to talk to the doctor. We went to her office, and we both remember the gut- wrenching feeling walking into the office. His Neurologist came into the room, and began talking. As she told us our son did indeed have SMA, I remember the tears rolling down my face, and as Alexander was sitting on my lap, he looked up at me smiling and kept repeating “Happy, Happy, Happy.” In that moment, we knew that everything was going to be just fine. Yes, our son was going to have a long road ahead of him, but we had a smart little boy with a great personality.
Since the diagnosis, Alexander has had many doctors and therapists come into his life. He now receives weekly Physical Therapy, Occupational Therapy, Speech Therapy, Developmental Therapy, and Nutrition. He has seven different specialists that he goes to. Alexander is a very bright boy; he struggles with the daily physical challenges, but we are working hard to adapt things for him. He has many braces and equipment, and has adapted to all of it really well! He went at 15 months to get his power wheelchair. He was the youngest child at Riley Hospital to try out a power wheelchair. They were very doubtful, but they put him in one and he took off. They were so impressed that he could drive it and stop it. He still needed experience, but they agreed he needed one. He is still learning how to maneuver it, but loves his wheelchair and the independence he has in it. We are very grateful to have such a special little boy, and we know he is going to do great things.
Families of SMA have been a great support system for both Alexander and our family. We have attended a walk in Ohio and their annual conference in California this year. They both were great experiences, and meeting all the families affected by SMA was incredible. Families of SMA sent Alexander a care package after his diagnosis, and are always there to help us with anything we may need. They fund so much research to find a cure for SMA, and we are grateful to have such a great organization there for our family.
We all want to thank you for your support,
The Davis Family
Sean, Anastasia, and Alexander
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