In June of 2007 I was a healthy 15 year old who was very active in Marching Band and dancing. Until I started to get numbness in my legs during marching band practice. I went to the doctor multiple times for the numbness and they ran some tests and sent me home. A short time after this I left town with the marching band to go to IL for a few shows and practices. While we were in IL I woke up one morning and was unable to walk and had no feeling left leg and some sensory changes in my right leg. My mom came to get me and took me to the hospital right away. I spent 4 days in the hospital while they ran multiple tests, and in the end went home with no answers. I followed the band to Canada that summer to watch the tour since I could not finish out the summer marching. Shortly after we returned from Canada I started physical therapy to learn to walk again. I used a cane to support myself and eventually needed crutches and a leg brace to get around while I could not use my left leg. I also saw many different doctors to try to find a diagnosis for whatever was going on with me. In early 2009 I after several years of tests and seeing many different specialists I received a diagnosis of Transverse Myelitis.
Transverse Myelitis or TM is a rare immune-neurological disorder that can affect anyone of any age, race, or gender. It is caused by inflammation across both sides of one level or segment of the spinal cord. The inflammation can cause damage or destroy myelin which is the fatty substance that covers nerves. The damage causes interruptions between the nerves of the spinal cord and the rest of the body.
After many hours of physical therapy I started to regain muscle control in my left leg. In the summer of 2009 I marched a summer with the marching band again after the onset of my TM. I also started dancing again in 2009. I continue to have lasting effects of TM I wear orthotics sometimes to help with walking, and balance, numbness in my left, and difficulty with isolated muscle movements outside of walking, continued pain and much more. Through it all I have managed to find my “new normal” and as things change with a positive outlook and attitude I adjust to the change and what very well be the new “new normal”
I have always believed that my positive attitude and perseverance are what helped me improve as far as I have. I have also been lucky to have a very supportive family and supportive friends through my journey. I was also very lucky to be able to still participate in marching band by playing in a chair on the field during the summer that I could not march with the band. One quote that has always inspired me is “Whenever we begin to feel as if as we can no longer go on hope whispers in our ear to remind us that we are strong.”- Robert M. Hensel. I have found a great resource through TMA and have joined a group that organizes a run/walk roll fundraiser in IL. I would like to ask you to help raise awareness for TM and to support research and a cure of TM and other rare immune-neurological disorders. If you are able to sponsor my team please visit our fundraising page https://www.crowdrise.com/kaciebailey1-2014-illinois-wal/fundraiser/kaciebailey1.
Thank you for your consideration, and I look forward to seeing you on October 5th,
BENEFITING: The Transverse Myelitis Association
The goal of the Illinois Walk-Run-N-Roll Campaign is to increase awareness and raise funds for research and programs for individuals suffering from Acute Disseminated Encephalomyelitis (ADEM), Neuromyelitis Optica (NMO), Optic Neuritis (ON), Transverse Myelitis (TM) and Recurrent Transverse Myelitis, and their caregivers.
Everyone is invited to register, donate and spread the word. Teams are now forming. For information, contact Nancy Dove at firstname.lastname@example.org or (312) 316-5262.