“Hi, I’m McKenzie Andersen! I’m 12 years old and I have Acute Flaccid Myelitis. AFM is a neurological disease which is caused by Enterovirus D68. EVD68 is a strain of the Enterovirus which causes Polio. It’s basically considered a modern day polio, no doubt about it. Symptoms include sudden weakness in the arms or legs, along with loss of muscle tone and decreased reflexes. The disease has treatments for it like PLEX, IVIG, Plasmapherisis, and steroids. There’s no cure, just treatments and supportive care.
During last Christmas break, my mom, brother and I all got a bad cold. They got better, but mine turned into pneumonia by Christmas Eve, and then continued to get worse. Three days later, I got severe neck pain, and later that night was the beginning of my paralysis. Between December 28th and 29th, after running so many tests, they determined I had Enterovirus D68, or a severe respiratory infection, which in turn caused the Acute Flaccid Myelitis. Within 24 hours, I was fully paralyzed from neck down and on a ventilator to breathe. I spent 6 months in Randall Children’s Hospital in Portland, Oregon. My birthday was on January 8th and I was sedated for 2 weeks so I basically missed it.
When I was younger, I loved to break dance. I made up my own moves. It was all I would do day and night. Being forced into the hospital for long periods and paralysis sure changed that. I missed it so much.
I was lucky to have amazing nurses. My hospital rooms were always covered in get well cards from ceiling to floor. But I didn’t smile even once for the first month. I missed my regular life. My parents supported me as much as they could. I couldn’t have done it without them.
Once I was discharged, we had to live at a hotel for a year and then the community built us a house! We also got a medical bed donated and I got a Make-A-Wish trip to Disney World in 2016. It was cool, but they don’t give you enough time there. I was sick one day, plus two days of traveling, so that left only two days to explore. Still, I am grateful.
I also went to the Kennedy Krieger Institute in Baltimore, Maryland. I was there from late December of 2016 to February of 2017. It was the first time I had ever done intensive therapy and it was worth it. I held my head up on my own with back support for three seconds. It was amazing! One step at a time.
I am definitely more sensitive about some things like people staring at me. There’s even been a few occasions where parents actually pull their kids away from me as if I was contagious. I try not to let those moments get me down.
Now, I’m trying to raise awareness for Acute Flaccid Myelitis and other diseases. If you want to help spread the word about AFM it would mean the world!
The advice I would give to anyone going through something similar is, hold on to all of your friends for as long as you can, don’t regret having to advocate for yourself, and know there’s nothing wrong with doing what you have to to get what you need!
I’m living day by day. I try to live life to the fullest and find joy anywhere I can, because if you can’t, what’s the point of living? Some people think I should be depressed because I’m disabled. I’m not, I’m happy, ambitious, and brave! I love my life and the people in it!”
Read more inspiring stories of living with disabilities here:
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‘He loved me for who I am, I want everyone to see exactly who I am! I will never be ashamed again.’: Woman with prosthetic leg learns to love herself after tragic loss of husband, ‘If you live with a disability, a malformation, a birthmark–DON’T feel like you need to hide it!’
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