He is 3 years old and named Kiko Violante. She is 7 and her name is Skyla Sandoval. Separated by about 800 miles, she in California and he in New Mexico, they share a similar story, an experience and a disease: acute flaccid myelitis, or AFM.
AFM can happen to anyone. It arises when the body’s own immune system attacks the spinal cord, specifically the gray matter. In this butterfly shaped part of the spinal cord, the intricate neurons receive and transport messages that allow us to move, function and feel. When the immune system attacks this region, these vital messages are cruelly disrupted, delivering symptoms ranging from weak limbs, immobility, breathing issues and, in most cases, paralysis in some form. According to the Centers for Disease Control and Prevention, 2016 showed an alarming increase of AFM, with at least 120 new cases — most of them kids — in nearly 40 states. Although AFM is a rare disease — roughly 1 in 1 million people are affected — this increase is of enormous concern.
AFM is a subset of transverse myelitis, the disease that paralyzed me almost 18 years ago. Since that time, I have never stopped pushing for more public awareness of the condition and efforts to better understand, prevent and treat it. Seeing kids continue to be diagnosed with these paralyzing conditions nearly two decades later — and knowing that their families are still being told there’s largely not much that can be done — is truly heartbreaking.
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For Kiko, it started with a runny nose and cough shortly after his first day of preschool. About two weeks later, he woke up from a nap and vomited. Laura, his mom, took him urgent care where doctors sent him home with a diagnosis of strep throat. Kiko’s symptoms got worse. Soon, he couldn’t move his right shoulder, his neck was stiff and he had trouble waking up. Terrified, Kiko’s parents raced him to the emergency room, where a series of tests were performed, including an MRI, CT scan and spinal tap. Eventually — after Kiko was admitted to the intensive care unit — a diagnosis of transverse myelitis was made. But the family’s journey to discovering what was robbing Kiko of his health had only just begun.
They traveled to a hospital in Denver, where this condition is being studied more closely. Once there, tests revealed that Kiko actually had acute flaccid myelitis. He had already undergone many treatments for transverse myelitis — steroids, for example, and plasmapheresis to replace bad actors in his blood with good components — but the diagnosis of AFM made him eligible for an experimental treatment that his medical team said was showing some promise against AFM: high doses of the antidepressant Prozac.
[See: The Honor Roll of Best Children’s Hospitals 2016-17.]
Today, Kiko is back home in Albuquerque, after spending about three months in the hospital. Although he is strong, he remains paralyzed from the neck down with very minor ability to move his head or lower extremities. He is continuing to learn how to breathe again on his own by having his ventilator removed for minutes at a time each day. The long road of physical therapy is going to be extremely valuable for him in the hopes of gaining more movement back.
“He can only go up from here,” says his mother, Laura, for whom the entire experience has been incredibly difficult. “I miss our old life where he ran after me and joined me in all my activities. I miss him jumping off the couch and into my arms. I miss him jumping in the bed and his hugs and kisses. It has hit me hard because I want everything for him.”
Like Kiko, Skyla’s case started innocently enough in August, with cold-like symptoms and a fever. But then her right arm went numb, which she told her mom, Aileen, felt like “somebody was pushing it down.” After thinking she just slept on it wrong, Skyla went to bed but awoke the next morning squirming off her bed without the use now of both arms. “I freaked out,” recalls her mom, Aileen. The local children’s hospital told her they had “never seen anything like this before,” and many scans, tests and specialists later, Skyla got a diagnosis: AFM.
[See: 10 of the Biggest Health Threats Facing Your Kids.]
When I asked Aileen about how this experience has affected her, she said, “All you want to do is fix it, make it better and find a solution. To this day, I spend sleepless nights searching the internet for answers, feeling worry. We have hope of course, but the reality we see is that the disability will remain unless a cause and a treatment is uncovered.”
The trouble is, despite the startling rise in devastating AFM cases, AFM remains a rare disease. And when diseases are labeled “rare,” they just don’t seem to get the same urgency and attention that more prevalent disorders like cancer do. Parents tend to think, “That will never happen to my child.” And on the global disease scale, disorders like AFM are mere beetles dwarfed by more dominant, elephant-like conditions. But as those of us who have — or have been touched by — one of these rare conditions can attest: It’s imperative for them to be accurately diagnosed, studied profusely and recognized in primary care offices and hospitals.
So … Why Should You Care?
The probability that you or your child will get a disease like TM or AFM is so low, that I get it. The dinner table needs to be set and the car needs gas. I also know that inspirational stories of survival and perseverance are great water cooler discussions, where the distance between them and you is comfortable. But if you could step into my shoes (or Kiko’s or Skyla’s), you’d discover that no matter how much time has gone by since I became paralyzed or how many calls we get at the Cody Unser First Step Foundation alerting us to new cases, I am not yet numb to the feeling of frustration, anger and helplessness. Instead, my motivation to raise awareness keeps growing. The CDC, state health departments, teaching hospitals, the transverse myelitis centers at Johns Hopkins and at UT Southwestern Medical Center, and the non-profit advocacy organizations like mine carrying this mission forward: We all have role to play in solving this puzzle — and to stop the storm of autoimmunity from crippling more children.
It’s unfortunate that it has taken a cluster of recent, mysterious cases of previously healthy kids being hospitalized with paralysis for AFM to be discussed on a national scale. The CDC is tracking these cases closely. Perhaps the agency can be the entity that finally helps us solve these enigmatic diseases. It’s also imperative that our health departments continue to work closely with hospitals and the CDC in reporting AFM cases so that the understanding of not only AFM, but the family of autoimmunity to which it belongs, is a collected effort.
Until then, we will keep answering the calls to our foundation, holding our breath each time someone reports another case of TM, AFM or other subtype. My mom, Shelley, can identify with the panicked voices of parents on the line, as she is flooded with the familiar feeling of helplessness that overwhelmed her when I was inexplicably paralyzed before I’d even reached my 13 th birthday.
For me, I replay every daunting experience I’ve gone through: the vulnerability, the depression, the embarrassing bowel accident with my first boyfriend, desperately stabbing my legs with sharp pencils to somehow wake them up. These have all contributed to my discovery of the courage needed to be a visible, outspoken advocate for this disease.
As 2017 unfolds, my continued mission is to scream the words transverse myelitis and acute flaccid myelitis, even underwater with scuba gear on (read about that part of my work here). My hope is that I’m loud enough to ring in the ears of those who can make a difference in research, government, academia and health care. My goal is that Kiko and Skyla, two kids with AFM, will never feel alone, since the community surrounding this “rare” orphan of a disease will encourage their every newfound milestone. Yes, that prom tuxedo may be put on a little differently or that high school essay may be typed with just one arm. But nothing will stop them.
What inspires me? Kiko has found ways to communicate his wants and needs to his parents with the help of a fleet of superhero action figures, posing their strength on his window sill. And Skyla? She is figuring out how to write with her left arm, keep up with the other kids in school and ride her bike with help from her mom.
I truly hope that 2017 will be the year that research into these autoimmune conditions will produce some answers. What parent would ever expect paralysis to arise from a child’s seemingly innocent cold, asks Skyla’s mom: “All of the sudden, it turns into something that nobody knows how to fix or prevent?” She adds: “I have two other kids. Do I need to freak out every time they have a cold?”
I can’t wait for the day when we can calm these fears and celebrate a new year without any more kids being handed the life-changing diagnosis of AFM.
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Please Stop Acute Flaccid Myelitis from Paralyzing Kids originally appeared on usnews.com
