Landen

My name is Landen. I am nine years old, and am in fourth grade at McAllister Elementary in Sherrill, NY. I am a very normal nine-year-old boy. I like to play soccer, video games, and hang out with my friends. But I am also different because of my disease, called XIAP deficiency, an autoimmune disease which has weakened my immune system.

XIAP causes me to have episodes that make me very sick with fevers and stomach pains and sometimes miss school. My body feels weak, and it hurts to stand. When I see doctors at Upstate Cancer Center in Syracuse and Cincinnati Children’s Hospital I undergo blood work and treatments. Currently, we have not found a treatment that works yet. The only cure for my disease is a bone marrow transplant. I want to have the cure, but I’m told that it would make me very sick for a long time. My disease is horrible, running my life and making me miss out on really cool stuff.

I am thankful for Paige’s Butterfly Run because they gave me two Peds Pals. Joseph and Jessica take me out to do cool stuff. They make me happy. They also came to see me in the hospital when I was sick. That made me happy too. I know that the doctors are working hard to help me feel better. I want the doctors to cure me, so I can end this horrible disease.