My Story!

Hi, my name is Kyle James Gundy.  I was born on Novemeber 1, 2004. I am the second son of Michael and Jana Gundy.  I have a brother, Tyler Michael, who is exactly 18 months and one day older than me.  At six weeks of age, my mother took me in for a stomach ache and we left a neurologist's office with an unconfirmed diagnosis of spinal muscular atrophy.  My family was in shock. We had nothing like this in our family, that we knew of.  I had lost all of my reflexes and most movement.  Two weeks later, we got the phone call that changed all of our lives forever.  I had sma type 1. I probably wouldn't live to 8 or 9 months, 2 if we were lucky.  No, there was nothing you can do for him, just take him home and love him. What? My parents already loved me.  So, they took me to St. Louis to be in a clinical trial to slow down my disease.  They also took me to the best doctor in the world, Dr. T.L. Carey.  He told my mommy and daddy that there was hope and that there were things we could do to help me.  At 4 1/2 months of age, I got aspiration pneumonia. I had a gtube and fundo done to eat.  The staff at this hospital I was at were VERY incompetent, I almost died twice and couldn't be extubated, so they transferred me to Dr. Carey's hospital and two months after I first went in the hospital, I came home! Mommy and daddy switched me to sodium phenylbuterate but in the switch, I lost my arm and head movement. Mommy was upset, but she didn't dwell on it.  I now love watching tv, movies and playing with my switch toys. I tap a switch with my foot and make them go. I'm getting a powerchair which will be used to run over my big brother.  Mommy wants everyone to know that we are very happy and not to feel sad or sorry for us. God made who I am and everyone loves me!  God made me special and he loves me very much!
Kyle was diagnosed with SMA type 1 at 6 weeks of age. We were completely stunned but chose to be active in caring for Kyle and not feel sorry for ourselves. Kyle received a feeding tube at 4 months of age along with a BiPap, pulse oximeter, cough machine and many other contraptions. Kyle was trached at age 4 in 2009 because he no longer was able to breathe on his own for any period of time. He loves his trach and so do we! We get to see his handsome face and he smiles so much more now. While these things may seem like a lot and very overwhelming, they are something we see as little details to a very full life. They are there but they are not what defines Kyle. He is so much more than that or than sma. God gives us each a life to live and we are blessed to be on this journey with a smart, ornery beautiful boy! Kyle loves movies, Veggie Tales and Pixar the most, going to school, the zoo, the aquarium and most of all, the mall. He travels a lot and from coast to coast. Never feels sorry for us or Kyle, God has blessed us tremendously.