My name is Aubrey Poole. When I was 4 months old I was diagnosed with Spinal Muscle Atrophy, type I. This disease is the number one genetic killer of children under the age of 2. My body is failing me because my motor neurons are not getting enough protein from my body to stay vibrant and alive. They (motor neurons) eventually die since they cannot function. The protein that our bodies get come from a gene called SMN1, I unfortunately do not have this gene.

I will have a tough road ahead of me. The biggest obstacle that I'll face is my respiratory system. I don't have the strength in my muscles to expand my chest cavity sufficiently to use my lungs properly. I am what they call a stomach breather or diaphragm breather. If I get sick with a cold/flu/pneumonia it can be devastating to my body. That is how most of us kids die. It will be very important that we keep me away from illnesses throughout the winter. If anyone is sick or has a sick child I will need to stay away from you. If you know you are sick or have been around someone who is sick please do your best to stay away from us for that time period. Thanks for understanding…

In order to overcome these obstacles I have to go through a daily routine of machines and medicines. I am currently on a very expensive medicine, 4 times per day, to help my current motor neurons functioning properly and to hopefully increase some that are not working so well. I also have to do my cough assist machine, which helps me cough, at least twice per day with suction after. At night when I sleep I am on a bi-pap machine that pushes air into my lungs so they can properly fill my chest cavity. At night I am also on a continuous drip of food and an oximeter to measure my oxygen levels.

Other than that I am just like any other child my age. I enjoy playing with my sister Avery, cousins- Isabella, Eilyanna, Addison, and Camden, and neighbors- Ellie, Tyler, Kylie, Owen, Emma, and Sofia. I love going for walks, watching my kitties, and playing with the toys in my crib.