I was born on June 1, 2005. I came out a big healthy baby or at least we thought I was healthy. Around 6 months of age, my mom and dad started to worry because I had not rolled over yet and my gross motor skills seemed to be a little behind. They know how much I love to lay around and cuddle, so they figured that maybe I was just laid back, and maybe a little on the lazy side. Just to be safe, they decided to get a professional opinion.

And then the devastating news came when I was 7 1/2 months old! On January 19, 2006, I was diagnosed with Spinal Muscular Atrophy, Type 1. The disorder is in my genes from birth, but there were clues that told us it probably started setting in between 4-5 months (though we didn't realize it at the time). At the time of the diagnosis, my parents were clueless because we didn't have anything like this in the family and they had never heard of it before. It was the most difficult and painful news they ever had to hear. Life changed from that point on and the rollercoaster ride began. A few days later, I did a swallow study and found out that I was silently aspirating my food. In other words, some of my food was going down the wrong way and into my lungs. This is a very common symptom of SMA. I was immediately admitted into the hospital and an NG tube was inserted down through my nose and into my stomach, which allowed me to eat. This was a temporary solution, until I could get a g-tube put in, which I later did. My g-tube is like a little button that opens and shuts in my tummy. It's very efficient, but mom and dad sometimes have a hard time with the fact that I can't eat like them. I do eat healthy stuff though. I have a special diet that consists of Tolerex (a special formula containing a pure form of amino acids, allowing for easy digestion). I get this over a feeding pump through the night. And during the day, I get a mixture containing fruits and vegetables that gets poured directly into my tummy through my button (g-tube).

Besides a swallow test, I also had to have a sleep study. This test predicted that I had slow moments of breathing during the night (another SMA symptom), and therefore I now wear a bipap mask at night to help me breathe better and expand my lungs. Mom and Dad also do chest physio-therapy on me, and cough me with a machine called a cough assist. They go down my nose and throat with a catheter and a suction machine to get rid of any secretions that I am too week to get up. This was very hard at first, but I got use to it all very fast and now it's just a part of our normal routine. We do this in the morning and before bed, but when I'm sick, it's done every 2-3 hour. I also get lots of therapies to keep me limber. I get OT, PT, Aquatic Therapy, and Speech. We also get weekly nurse visits... so we get a lot of visitors at our house, which I really enjoy because they all come to play with me.

Even though I've had it tougher than the typical child, I am a very happy boy. You can probably tell from my pictures that I love to laugh and smile and cuddle with my family. And I love to play with all of my toys and flip pages when mom reads to me. And I know that I'll never sit or walk (until a cure is found), but I'm very smart, so my brain is strong. And I have a lot of people who love me more than anything in life, so I know that I am luckier than most in some ways. And I know that I am special because I have taught my family what true love is and I've taught them what's important in life and how to appreciate every minute of it that they have with me. And they are forever grateful to me for that.