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Fight rare neuro-immune disorders. Together.
Before October 9, 1999 and after. You can definitely think of our journey that way. So much changed literally overnight. The diagnosis for Rachel at age 6½ months came as such a shock and unfortunately, it took a while. After answering countless questions in the emergency room, subjecting our infant daughter to first a spinal tap. then CAT scan, then MRI at 1 am, I remember holding my daughter’s picture to my heart as we cried wondering why our daughter wasn’t moving after meeting all milestones until then. We also suspected life as we knew it, had just changed drastically. The MRI showed spinal swelling at C3-C7 and a spinal syrinx. The CAT scan showed too much white matter in her brain. I think because of some of these other things noted, it took longer to determine their impact on Rachel’s symptoms. Then came the words we had never heard before, Transverse Myelitis. The PICU nurse provided us with a print out of the Transverse Myelitis website (www.myelitis.org). We spent hours just reading through all the information but what remained with us the most was the devastating fact that there was no cure. I remember wishing our baby girl had Guillain-Barré syndrome (who wishes something on their child?), but at least that was curable.
Over the years, Rachel has endured countless hours of physical and occupational therapy and far too many trips to the Neurologist, Urologist and Orthopedic Surgeon. We would do whatever we could to help our daughter. Rachel even spent several weeks over about three years in outpatient bladder stimulation treatments at Chicago’s Children’s Memorial Hospital to try to help her small, neurogenic bladder work better. This is still a struggle. So many things come with being paralyzed and it is usually the symptoms you cannot see which are the most life-changing.
With no muscle memory of walking, Rachel today is a full-time wheelchair user, but it’s ok. She’s here. She is enjoying life but it is not always easy. The surgeries Rachel has endured have been very hard on her both emotionally and physically. There have been so many – eyes (really, why does our paralyzed daughter also have to have crossed eyes??), but the worst have been the obvious urological, orthopedic and neurological. The physical scars are there as a reminder, but as you will see in Rachel’s own words, the emotional scars can sometimes be the hardest to overcome.
We have so many people to thank over the years including family, friends and Rachel’s physical therapy team who has been involved in Rachel’s care from the beginning. Also, the TMA is a wonderful organization that brings people together (including kids at a summer camp) that all suffer from TM and related neuro-inflammatory conditions. This is AMAZING and we are so grateful for this resource because we always knew from the beginning that we were never alone in this journey.
Today Rachel is looking forward to going away to college next fall and she should be getting her hand-control driver’s license very soon! Other than that, she is a typical busy teenager; volunteering at a nursing home, participating in Youth Challenge activities, horseback riding, spending time with her service dog (Max) and looking forward to a very bright future!
I actually have no memory of when I first became paralyzed. Having Transverse Myelitis is the only life I have ever known, and most likely the only life I will ever know. So, I am going to tell you what my parents told me about being diagnosed with Transverse Myelitis when I was 6 ½ months old.
On Friday, October 8th, 1999, I was very fussy, I had cold symptoms and wouldn’t eat. It was odd that I didn’t want to be held, so my mom and dad put me in my vibrating chair and I slept that way in my parents’ room with the humidifier on. The next morning, my parents found me laying completely still in my chair, with a high fever and I hardly made a sound. Horrified and fearful, they took me to my pediatrician’s office. They thought my muscles had shut down due to the upper respiratory illness and ear infection that I was diagnosed with. I was given a shot and I didn’t cry, how odd. They wanted to see me the next day (Sunday) and since I was not improving, they arranged for me to be seen in the Emergency Room at Rainbow Babies and Children’s Hospital in Cleveland, Ohio. After many questions (even troubling ones that questioned falls, etc.), they did many tests to rule out other things. It was such a scary time, how could a baby just one day wake up and not move?
It was a week from the onset of symptoms until I was diagnosed with Transverse Myelitis and was started on heavy doses of IV steroids. I know my parents still wonder, “What if we had taken her to the ER directly?” But even then, it took time (probably valuable time) to figure things out. At first, I was paralyzed from the neck down. My hands were in fists, but once on steroids, my fingers slowly began to uncurl. Soon I had regained complete function and control in my arms. Nine months later, I began scratching at my legs to the point where they would bleed. Although I could not communicate, this is probably when I was regaining feeling in my legs. Even though I am a full-time wheelchair user today, I am very grateful to be able to feel everything and not have any pain.
Since my diagnosis, I have had over 18 surgeries, the hardest of which were my back surgeries. Like most people with this condition, I have scoliosis. I was diagnosed at ten, and at twelve I had the upper two thirds of my back fused. This surgery was followed by a complete fusion in July 2012. Two months later, my physical therapist was looking at my incision and noticed what looked like a rash. I went back to the doctor who did my surgery, and he told me it would go away. Over the next year, the rash turned black and blue. I also had a water filled sack that cushioned a screw that was protruding from my back. In September 2013, I was having constant low-grade fevers which then spiked to 104 degrees and I felt miserable. I went to my pediatrician and had bloodwork done. On September 18th, she called my parents and said that my infection markers were off the charts. She told them I had to go to the Emergency Room right away. I spent 12 days in the hospital with an infection in the rod in my lower back. I had three debridement procedures in the area, and had the hardware from my most recent surgery taken out. However, I had an unexpected complication. I went into acute kidney failure due to the strong medication being filtered through my kidneys. I was in a coma-like state for 28 hours, and spent two days in the PICU. I was released on September 30th and my parents had to give me antibiotics through a PICC in my arm for a month. I missed six weeks of school at the start of my freshman year, and had to be tutored to catch up. Once the PICC was removed, I returned to school, but had to take antibiotics orally for another five months. During this time, even though I was physically recovering, my mental health began to get worse.
I know that I have always had anxiety, but after my back infection it was at an all-time high. I wanted to be in control of everything, especially my grades. This caused me to become stressed, and I would cry if I did poorly on a test, or an assignment. I also would start sobbing anytime I had to see a doctor. Finally, in August 2014, I decided to start seeing a Psychologist. Over these past two years, she has helped me sort through my anger surrounding my infection and all that I have had to endure over the years. She has also given me coping skills that I can use when I have to have another surgery, or I need to see a doctor. Even though what happened to me was traumatic, I believe it forced me to acknowledge my mental health. If I hadn’t gone through it, I think I would not have sought help for my anxiety. That experience also helped me realize what I believe is my purpose in life. I want to counsel those with disabilities, chronic diseases, and conditions that require frequent hospitalizations and surgeries. My dream is to go to The Ohio State University next fall, and major in Psychology. I want to conduct research on the link between spinal cord injuries and anxiety and depression. I believe the mental health aspect of having a disability is largely ignored, and I want to use my experiences to relate and help others through the hardest times of their lives. I want to tell patients and their families that they can lead normal lives, and that their disease or condition doesn’t define them. Sure having Transverse Myelitis isn’t the life anyone desires, but it was the one I was given, and I want to use this life to inspire and educate others.
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