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With a rare, paralyzing disease, you must advocate for yourself

The author with her cat Loki. (Image courtesy of the Andersen family.)

Albany, Oregon, U.S.A. – Hello! I’m a teenager who has a disease called Acute Flaccid Myelitis.

It is caused by the enterovirusD68, also known as a version of the common cold.

But unlike a bad cold – which can send you to bed with a runny nose and a box of tissues – this virus paralyzed me and changed my life forever.

While it affects people of all ages, children are most likely to contract AFM. Researchers are trying to determine what is in the patients’ DNA that makes them more susceptible to the virus.

The day-to-day for me most likely looks a lot different than yours. I have had a difficult life, but everyone has struggles.

When I was six years old, my whole family came down with the common cold on December 19. They got better and I didn’t.

Before she got AFM, McKenzie loved to breakdance. This photo was taken months before she got sick. (Image courtesy of the Andersen family.)

By Christmas Eve, I had gotten a lot worse. We had to go to Albany General, our local hospital, where we discovered that I had pneumonia. The doctors sent us home that night.

After coming home, I wasn’t getting any better. A few days later, I developed a severe neck pain. I couldn’t bend my neck backwards. My body grew rigid and I was screaming in pain.

My mom took me back to the hospital, but because I was able to touch my chin to my chest, they said it wasn’t meningitis and I was ok to go home.

Give her some ibuprofen and use ice packs and she should be fine, they said.

Later that night at home, my symptoms had grown worse. My mom called my doctor and asked what to do.

We didn’t want to get sent home again.

I survived life-changing paralysis

My doctor told my parents to take me to a different hospital emergency room, this time in the nearby town of Corvallis, Oregon.

When I tried getting up to go to the hospital, my legs went out from under me and my head, I couldn’t hold it up.

My mom described it as a bobble head.

She rushed me to the other hospital, where they ran many tests. I was severely dehydrated because I couldn’t keep anything down, not even water.

When I was in the hospital bed, I felt a little better. Someone brought me a Popsicle. I tried reaching for it and I couldn’t.

That really scared me and my mom didn’t understand, either.

They admitted me, and after more tests, the doctors said I had what they believed was AFM, Acute Flaccid Myelitis. It’s a neurological condition that damages the brain and spinal cord.

Because of the part of my brain that was affected along with my spine, I would eventually lose the capacity to breathe on my own.

The hospital in Corvallis had already called Randall Children’s Hospital in Portland, Oregon, and they were on their way to get us so I would be in the proper place for such extensive care.

A young McKenzie in a hospital bed, a large Olaf watching over her. (Image courtesy of the Andersen family.)

It was pretty scary and overwhelming, and my mom kept assuring me as best she could.

My mom actually saved my life. She had heard of a strange virus that was impacting children and even asked the first hospital if it might be what was wrong with me.

Unfortunately, they dismissed her concerns and sent us home.

If my mom had listened to them then, I would’ve died. Instead, she kept pushing until we got answers – and the care I needed.

My right side was the first to go paralyzed.

Within 24 hours of getting admitted to Randall Children’s Hospital, I was completely paralyzed from the neck down.

I ended up being confirmed positive with AFM after tests at Randall Children’s Hospital.

A respiratory therapist intubated me and they sedated me for two weeks.

I missed my seventh birthday.

When I woke up, I had a tracheostomy in my neck. That’s an opening in your trachea so that you can breathe through a machine called a ventilator.

I couldn’t speak for about four months because of my paralysis and tracheostomy.

I stayed in the hospital for six months.

“Trapped in my body”

Before I was paralyzed, I was a dancer.

McKenzie practices her breakdancing moves before being paralyzed. (Image courtesy of the Andersen family.)

After I got AFM, I thought my life was over. I could not move my left or right hand or anything. I couldn’t speak.

It felt like I was trapped in my body.

Then a persistent art therapist came to my hospital room every day for over a month, pitching art.

McKenzie at about age 9 sitting in her wheelchair. The photo is meant to show her 90-degree scoliosis that she had years ago before her spinal fusion.(Image courtesy of the Andersen family.)

I kept saying no, but I eventually said yes and it helped.

I also participated in music therapy. That helped immensely, too!

By the time that I had left the children’s hospital, I had regained movement in my left hand, courtesy of an iPod that a friend had given me.

Doctors put a G tube in me in March of 2015. It made it possible for me to be able to get the nutrition and the medications that I needed for long term care.

It took me almost two years before I could eat food again. That was really hard, but so exciting when I finally got to eat food like everyone else.

These days, I have a G/J tube. It is two tubes in one. The J tube, or jejunal tube, is placed during a procedure called an endoscopy where doctors go through the jejunal wall to place the tube. Then the G tube, or gastrostomy tube is placed into a special opening, called a stoma, on my abdomen.

At left, the author sitting in her wheelchair covered in confetti from her birthday a couple years ago. At right, a more recent photo with cat Ratchet sitting on her chest. (Images courtesy of the Andersen family.)

A regular routine

In the morning, my mom sets my meds up and gives them to me through these tubes. Unless I’ve just had surgery, I don’t get my food through the tube.

I eat hot dogs, fries and jojo potatoes just like a lot of people do.

Then I have to do schoolwork, because I’m homeschooled.

I work on writing things and after I write, I study a lot.

Therapy is hugely important for patients with AFM.

We’ve had some ups and downs with this, but I hope to improve things after some surgeries.

Because of my paralysis at a young age, I developed something called a contracture behind both of my knees. A contracture is when lack of movement leads to the muscles around a joint shortening, causing prolonged stiffness of that joint.

In my case, it needs surgical intervention.

The author in her wheelchair covered in blankets. She has a strap on her head and her hair up. She is wearing a light blue mask and making a peace sign with her left hand. (Image courtesy of the Andersen family.)

My paralysis also caused both of my tibias – large bones inside of the leg right below the knee – to turn outwards severely. They require surgical intervention as well.

So other surgeries are down the pike.

Coping with an AFM diagnosis

I made this picture to show my visual perspective. In this picture, my TV is mounted on the wall in front of me. I’m laying in my bed with my legs set up on a pillow. What you don’t see are my arms propped on blankets atop my bed. This is my perspective – McKenzie Andersen/YJI

There is no cure for Acute Flaccid Myelitis, just treatments and supportive care. Treatments include steroids; IVIG, or intravenous immune globulin, or human antibodies; and plasmapheresis, called PLEX.

Rehabilitation and weight bearing exercises can also help.

It is extremely important to throw everything that you can at AFM as quickly as possible. Once a person has it, there is no time to waste.

The author, sporting blue hair and a matching mask. (Image courtesy of the Andersen family.)

Watch out for the symptoms, which can be facial drooping and loss of movement in limbs. It is very important for children to get to a rehabilitation center right after you become paralyzed, just like the protocol is for adults.

Adults are told in the hospital that they have to go almost immediately to a rehab center, but there is no protocol for kids. That’s why it’s critical to have resources for help when things like this happen.

You need to make your voice and thoughts known to your doctor.

If your doctor doesn’t listen, find one who will. Even if a different hospital is far away, you need to go there.

I have learned the value of being able to advocate for myself. It is something I will continue to do for me and for others in the future.

I’ve now been paralyzed for eight consecutive years. It has been quite a journey.

McKenzie Andersen is a Reporter with Youth Journalism International.

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