Diagnosis: Transverse Myelitis

Illinois, United States

In Memory of Nickie Garrigan

April 1980. My daughter, Nickie Garrigan, developed Transverse Myelitis.  I wish she was here to tell you her experiences with TM.  Since she cannot tell her story, I will speak for her.

I was a healthy 2-year-old and had just celebrated my birthday when my parents noticed my left foot slightly turned in when I walked. I had recently received routine immunizations and had a slight cold. I then developed a stomach flu that did not respond to doctor’s care and was hospitalized for three weeks. These occurrences have been suspected of causing TM. During that hospitalization, I became weak and was in severe pain. I never walked normally again. I left the hospital with a diagnosis of juvenile rheumatoid arthritis. The first specialist I saw advised that I would be in pain and, I needed to get used to it. Not satisfied with that advice, I started seeing specialists at Children’s Memorial Hospital. During the summer of 1980, I received a tentative diagnoses of leukemia, degenerative muscle disease, and a brain abnormality. It was several months until I received the TM diagnosis and was told it was a one-time occurrence. I soon found out I actually had Recurrent Transverse Myelitis. MRI’s were not available yet and an orthopedic specialist diagnosed TM on the basis of damage to the spinal cord. I often had many mini episodes where I became weak, and oral steroids restored function many times. When I was 10, I had an episode that did not respond to oral steroids and was paralyzed from the neck down. That began my introduction to IV steroids. Christmas day I was able to wiggle my toes and limited function returned. I also learned I had Lupus. After a long recovery, I was able to walk again and tried to resume a normal life. I got my driver’s license at 16. I graduated from an all-girls high school shortly after having my first spinal fusion, and that summer drove to Florida with my friends. I was still having physical therapy at Children’s Memorial when I met a young mother whose daughter had TM. It was the first time I met another person with TM and it was my introduction to SRNA. I am forever grateful for the hope and support I received over the years from SRNA. SRNA made me into the strong woman I became in spite of my physical limitations. Complications continually occurred thru my 20’s and worsened in my 30’s. I attended every Symposium and made lifelong friends. I was planning on attending the September 2013 Symposium. By August of 2013 I could no long transfer in or out of my wheel chair but my brother, Russ, came every day to help with my transfers. He was also with me before my last ambulance ride. I told him I loved him and we didn’t know that we hugged for the last time. I still fought but the TM side effects caused a stroke and blood clots that were too much for me to overcome. I lost the battle on September 5, 2013. Please help support SRNA so that other families will not need to experience the loss my family has endured.

Nickie was a fighter. She never allowed either TM or Lupus to define her or to limit her. At the age of five, she won the Scout Halloween Costume party dressed as a ballerina with her long metal braces attached to hard white shoes. She wanted to become an Olympic gymnast; her family encouraged her to pursue her dreams as a swimmer. The day camp award for achievement and effort always went to Nickie. She received the highest awards in Girl Scouts and became a Girl Scout Leader. In April of her senior year of high school, she had spine surgery and managed to walk down the aisle to receive her high school diploma in June. Nickie became a SRNA support group leader in Illinois. She lived in Chicago. When she was able, she held support group meetings at a local hospital. Although she was not able to continue these meetings, she frequently received phone calls from new SRNA patients and shared experiences. Her courage inspired her family and friends and she is missed by everyone who knew her and cared for her.

Fran Garrigan