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Boy's Rare Brain Condition Means He Could Be Literally Scared to Death

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Five-year-old Reed Havlik has a rare brain condition called vanishing white matter disease. People with the condition are particularly vulnerable to stresses, including fright, that can worsen symptoms or even lead to death.
Five-year-old Reed Havlik has a rare brain condition called vanishing white matter disease. People with the condition are particularly vulnerable to stresses, including fright, that can worsen symptoms or even lead to death. (Image credit: SWNS)

A 5-year-old boy has a rare brain condition that could cause him to be literally scared to death, according to news reports.

Reed Havlik, who lives in Iowa, has a condition called vanishing white matter disease, a disorder that's been reported in only about 200 people worldwide, according to South West News Service (SWNS). Vanishing white matter disease is a genetic condition that mainly affects the brain and spinal cord, and causes deterioration of nerve fibers known as "white matter," according to the U.S. National Library of Medicine's Genetics Home Reference (GHR).

People with the condition are particularly vulnerable to stresses, including infections, head trauma or even "extreme fright," GHR says. These stresses could worsen symptoms, and lead to coma or even death. [10 Things You Didn't Know About the Brain]

That means that Reed and his family need to be particularly vigilant around Halloween.

"We have got to be really careful what we expose him to because he could be frightened to death," Reed's mother, Erika Havlik, told SWNS. "The stress of it all can speed it [the disease] up. We do celebrate Halloween but only on a really small scale."

People with the condition have a genetic mutation that prevents the body from producing enough myelin, a fatty substance that insulates and protects nerves, according to the Children's Hospital of Pittsburgh. It's this lack of myelin that leads to deterioration of the nerves.

Symptoms can include muscle stiffness and problems with coordination. The disease is progressive, meaning that symptoms get worse over time, and there is currently no cure.

Reed was diagnosed in 2015, at age 2, and his family has been told that he could die from the disease in three to seven years, SWNS reported.

"We are trying to give him as many opportunities in life and try to soak up every second we have with him," Havlik said. "Our world has been altered completely. It's been life-changing. Everyone has been showering him with as much love as they can to ensure he's as happy as possible."

Reed's family is raising money for research into this disease through a GoFundMe campaign.

Originally published on Live Science.

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Rachael Rettner
Rachael Rettner
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Rachael is a Live Science contributor, and was a former channel editor and senior writer for Live Science between 2010 and 2022. She has a master's degree in journalism from New York University's Science, Health and Environmental Reporting Program. She also holds a B.S. in molecular biology and an M.S. in biology from the University of California, San Diego. Her work has appeared in Scienceline, The Washington Post and Scientific American.