My AFM Story: Leah Killian

By Leah Killian

Hello to everyone taking a minute to read my story! Maybe you can relate to it, maybe something similar happened to you or your child. I wanted to share my story to help raise awareness for Acute Flaccid Myelitis (AFM) and hopefully give anyone going through something similar some encouragement. 

In 2014, when I was in 7th grade, I woke up one morning with substantial weakness in my legs. I was unable to walk and move my left arm. The night before had been hard, I was throwing up and experienced extreme pain in my neck and back. That morning, due to the seriousness of my symptoms, my parents rushed me to the ER. The doctor on staff told me that I “was faking it” and “there is nothing wrong with me”. Thankfully, due to the persistence of my parents and another doctor on staff that night, an MRI was ordered that showed inflammation in my neck and spinal cord. I was transferred to Children’s Hospital Los Angeles (CHLA). CHLA was a game-changer. They immediately had an idea of what was going on and sent in a team of doctors and neurologists to work on my case. 

At this point, I was experiencing complete paralysis from the neck down. CHLA had been aware of the recent spike in AFM linked to a viral infection called enterovirus. CHLA took additional MRI’s, blood tests, and a spinal tap. I was diagnosed with Acute Flaccid Myelitis and we began discussing treatment options. I spent a week in the ICU and another week on the medical floor. On those floors, I received seven IVIG treatments. The IVIG was extremely successful in working against the paralysis, and over those two weeks, I slowly regained the ability to move again. 

After those two weeks, I was transferred to the inpatient rehabilitation floor at CHLA. I spent four weeks learning how to walk again, regaining muscle strength, doing occupational therapy, and focusing on recovery. Recovery was brutal. I felt like my body was betraying me and the fight was against myself. However, each step and goal  I reached brought hope and gave me the motivation to keep going. CHLA made a tremendous impact in my experience. I have never felt support like the support CHLA gave my family and myself. Each interaction with every doctor left me feeling hopeful. The nurses that were charged with caring for me were like my friends and made all the difference. My physical and occupational therapists were equally as incredible. It was a hard adjustment and they both were there for me every step of the way. When I was discharged from the hospital, I could not simply step back into my life like nothing had happened. I started off using a walker to assist mobility, then progressed to a cane, and then eventually walked without assistance. I was experiencing a lot of pain after completing simple tasks or overexerting myself. There were multiple days that required the use of a wheelchair for me to attend school.

With time and additional outpatient therapy, I continued to recover and reached the point that I am at today. I still experience pain and other symptoms because of AFM, but I am constantly reminded that I can handle whatever comes my way, one step at a time. Through the support I received from my doctors and family throughout my recovery, I currently attend university and am taking on as many adventures as I can. I am so encouraged by SRNA and the work that they are doing to raise awareness for rare neuroimmune disorders. Before, it had always been difficult to get answers from doctors or answers to all these questions I had regarding my condition. Through SRNA, I am starting to understand a lot more and finally get some answers to the questions I have been struggling with for years. In addition, I have been able to connect with people that have gone through something similar. Connecting with people brings hope and I am so appreciative for the conversations I have been able to have through SRNA.

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