My JM Story

Luke holding Championship Trophy

My name is Luke and I am a veteran of a fight between myself and my immune system. In fact, I survived my own immune system trying to attack the healthy tissues of my body, known as JDMS.

Diagnosed at the age of four years old, I distinctly remember sharp pains in my thighs, impairing my ability to walk. The pain was intense and hard to deal with, especially considering my age. My earliest memory of feeling this ache was when I was riding in the back of my mom’s car as we were heading towards my grandmother’s house. I remember calling out “My legs hurt!” “My legs hurt!” until my mother was forced to to pull over and head back towards our home.

My parents, who were right by my side through all of this pain and confusion, have told me that I had a rash break out across my face, one that doctors could not diagnose. I recall desperately wanting to walk, but not possessing the ability to do so, my legs were so weak.

Ironically, my mother diagnosed me, through the Internet, prior to doctors diagnosing me with Juvenile Dermatomyositis. I quickly was admitted to the Connecticut Children’s Hospital in Hartford, CT where Dr. Lawrence Zemel helped to save my life.

Just thinking of my hospital time is difficult for me, lying in a hospital bed getting shots and IVs. I recall having “check-ups” where Dr. Zemel would toss a hacky sack to me before the appointment each time- at first I struggled to catch and throw it, but as time passed I steadily became able to catch and throw the ball. I went through chemotherapy, allowing me to meet certain UConn basketball stars. I remember a nurse, Maria, calming me down, talking to me, giving me a familiar face in that unfamiliar world. My father told me recently that the doctors made them aware of the fact that it would be very difficult for me to play running sports especially soccer.

Fast-forward twelve years. I recently became a state champion of Connecticut as a soccer player and competed in the National soccer tournament in Denver, Colorado. I finished my school year with straight A+’s as well. I didn’t get to this point of athletic and academic triumph without struggle, but in the end, I conquered JM. And you will too!