Watching my brother fight a life-threatening illness

Spreading awareness on babesiosis

Liv’s brother, Uri (right), contracted babesiosis from a deer tick.
Credit: 
Supplied by Liv Neilson

For three and a half years, I’ve watched my little brother miss out on high school friendships, relationships, and work opportunities, all due to a crippling and life-threatening illness.

In the summer of 2015, I was getting ready to move hundreds of miles away from Detroit for my first year at Queen’s when my 14-year-old brother, Uri, was unknowingly bitten by a black-legged deer tick and suddenly fell gravely ill. My terrified parents took him to doctor after doctor, eventually numbering more than three dozen—none of whom could diagnose him properly. 

There were x-rays, gastro scopes, blood tests, mold tests, allergy panels, special diets, and a multitude of drugs. They even tried natural remedies, like acupuncture, essential oils, and breathing exercises. For the first two years of Uri’s sickness, until he was finally diagnosed correctly, his disease went untreated. 

Babesiosis, a rare and sometimes fatal disease, isn’t tested for in common clinics. It’s an elusive blood disorder caused by a speck-sized insect—the deer tick—and was just classified as a disease in 2014. As a result, most medical professionals don’t know what it is.

While highly similar to malaria, both symptomatically and as a blood infection, it isn’t mosquito-borne. The Babesia parasite is transmitted through the black-legged deer tick—the same vector for Lyme disease—and attacks red blood cells in humans and other mammals. 

Right now, Uri is suffering a relapse and my family is told that it’ll be a long recovery. His symptoms range from fatigue, fever and chills, to intense nausea, stomach pain and a sensation of extreme and persistent pressure on his skull. 

He spends his days in white rooms filled with needles, tubes and doctors’ reassurances that his next treatment may be the one that heals him. He hasn’t attended a normal school in years. 

He spends his days in white rooms filled with needles, tubes and doctors’ reassurances that his next treatment may be the one that heals him. He hasn’t attended a normal school in years. 

I hope to shed light on this horrible and relatively unknown disease that’s taken over our family and robbed nearly four years of my brother’s life. I advise Queen’s students and their families to exercise caution this summer when hiking through heavily wooded or rural areas, wetlands, or even in your own backyards. While most commonly contracted in the Northeastern United States, the range of the deer tick is spreading—which can also account for the myriad diagnoses of Lyme, a much more common and closely-related offender.  

It’s important to check your skin often, and if you do spot a tick, to immediately pluck it out with tweezers. Generally, tick bites do not become infectious unless the tick has been latched on for more than 24 hours. If you aren’t sure how long it’s been on your skin, or are starting to feel ill, be sure to seek medical attention. As a preventive measure, you can also buy certain chemical repellants for your clothing and skin. 

But most importantly, it pays to be alert. Uri was perfectly healthy at the time of the bite and hadn’t been in the Northeast. 

It can happen to anyone. 

It’s strange to look back on my own high school years, spent performing onstage, going to prom, getting my driver’s license, and doing all of the things that high schoolers are supposed to do—and waiting to watch him do the same. But he’ll never experience these things.

Uri is weird, smart, and honest to a fault. He makes offbeat jokes, plays electric guitar and too many video games, and won’t do anything he isn’t passionate about. He hopes to one day be a programmer or a chef. In many ways, he’s a typical 17-year-old. Except this disease, for now, has ruined his life.

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