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November 5, 2014 was the beginning of my TM journey, a day that changed my life. I had had an insignificant cold a few weeks prior and had recovered. I had no signs of weakness before my onset, little did I know this cold was the beginning of my onset. It was a normal morning. I woke up and started getting ready for school when I started to have a horrible burning feeling in my legs. I called for my brother and grandmother and by the time they arrived to help me, I could no longer bear weight. I was rushed to Hasbro Children’s Hospital in Providence. When I arrived, the doctors asked me the same questions over and over. “Did you fall?” “Did you strain your back in any way?” My answer was no to all these questions. I had no explanation of why this could have happened. The ER doctors started me on high dose steroids, which were stopped hours later after my first MRI, when I was diagnosed with a spinal stroke. A cardiologist came and tested every vein and capillary in my body, I was put under anesthesia and had a TEE, where they looked at my heart. All of these tests were negative and they could not find any reason for my paralysis.
On November 8th, I was finally sent for another MRI with contrast, including a brain scan. When this MRI was reviewed, my doctors diagnosed me with Guillain-Barré syndrome. My neurologist decided at this time it would be best to start IVIG treatment. I underwent five days of treatment and once I was stable, I was discharged to Spaulding Rehab in Boston, MA. When I arrived at Spaulding I was diagnosed with Transverse Myelitis almost immediately. Dr. Nimec, my physiatrist, was the first to speak these words to me.
While at Spaulding I learned to adjust to “my new life,” my TM life. I slowly began to see some recovery. I could make my left leg twitch and began having nerve pain, all of which we decided was good, due to being flaccid for 14 days. I spent six weeks at Spaulding participating in therapies all day; speech, physical, occupational, counseling, and learning wheelchair skills. I was discharged right before Christmas. Leaving the safe haven of the hospital was scary but I was very excited to be home with my family, and was anxious to get back to school since I had already missed almost three months of my freshman year of high school.
Once I was home, I continued to work at PT, OT, FES bike and pool therapy. I am almost two years from my onset and I am a T7 paraplegic, but I have overcome so much. I continue to have small progressions and continue to work hard at therapy. I am a junior at the MET in Providence RI. I am preparing to go to college and I hope to be a child life specialist when I finish school. I am currently volunteering at a daycare and learning American Sign Language. I had the opportunity to go to the TMA camp at CCK in Kentucky this summer and meet so many amazing people. It was the first time I had ever met another person with TM! This is not the path I chose or expected for my life, but it is my path and I will not give TM the upper hand, I will continue to strive and be amazing!
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