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Fight rare neuro-immune disorders. Together.
Mackenzie’s journey with Transverse Myelitis began on September 26, 2014. The week began with early symptoms of pain and a burning sensation on her back and side. The initial thought by the pediatrician was that it was shingles, because she had recently been exposed to the shingles virus by both grandmothers. By Wednesday of that week, she began vomiting and the pain and burning sensations continued. We made two visits to the ER between Wednesday and Friday and were sent home both times with no answers. Later that same Friday, I noticed Mackenzie was walking with a slight limp and she looked off balance. I called her pediatrician and he said to get back to the hospital immediately and that he was ordering an MRI. Mackenzie went in for her MRI on Friday evening. The results of the MRI showed inflammation in the spinal cord between C5-C6 and T9-T10 and she was diagnosed with TM. By Saturday evening, she could not feel either of her legs. If here was any good news, it was that she never lost bladder and bowel control.
Mackenzie was started on high dose IV steroids that night and had a spinal tap to rule out other diseases and illnesses. As my husband and I sat in the hospital trying to comfort Mackenzie and attempting to understand her diagnosis, family members were frantically searching the internet for answers and information. They were determined to find someone that could help Mackenzie. It was through those searches, that we found the TMA as well as Dr. Benjamin Greenberg. Mackenzie’s pediatrician consulted with Dr. Greenberg for the next steps in treatment and Mackenzie received five treatments of plasmapheresis between October 1st and October 7th.
Mackenzie left the hospital on October 8th, still unable to walk, and was transferred to Shriners Hospital for Children in Chicago. While at Shriners, Mackenzie began aggressive physical therapy. Our inpatient stay at Shriners lasted for five weeks. Throughout her stay at Shriners, Mackenzie never gave up hope that she would walk again. She faced her journey with TM with determination, a fighting spirit, a joyful heart, and a smile on her face. By Halloween, Mackenzie was making amazing progress and was beginning to walk unassisted. She tired quickly and her legs were weak, but she continued to get stronger and stronger as the days went on. Just before Thanksgiving, Mackenzie was released from inpatient care at Shriners and WALKED out of the hospital. She continued outpatient physical therapy for 9 months and continued to make great strides in regaining her strength and the full use of her legs without any residual effects of the TM.
Mackenzie is now 2 years post-diagnosis and has no lasting side effects from the TM. We are so fortunate and we firmly believe that her early diagnosis made all the difference in her recovery. We are hopeful that more awareness will be brought to TM and its related disorders and that doctors will become more educated in identifying the signs and symptoms so that there may be more stories with an outcome like Mackenzie’s.
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