5-Year-Old Iowa Boy Could Die from Being 'Frightened' Due to Rare Disease, Says Mom
"We have got to be really careful what we expose him to," says his mother Erika Havlik
A 5-year-old boy in Iowa is dealing with an extremely rare condition where he could literally die from being scared, reports Fox News.
Reed Havlik has Vanishing White Matter disease, a condition that has only been diagnosed in 200 people around the world. There is no cure or treatment available for the disease, Reed’s mother, Erika Havlik, told the news outlet, and any stress on his head, like a bump, a fever or even being frightened could cause him to go into a coma or die.
According to the United Leukodystrophy Foundation, it’s a genetic disorder that affects the nervous system and causes neurological symptoms.
“We have got to be really careful what we expose him to because he could be frightened to death,” Erika told Fox News. “The stress of it all can speed it [the disease] up. We do celebrate Halloween but only on a really small scale.”
For Halloween this year, Reed dressed up as Mickey Mouse for his school’s party, and his teachers and classmates made sure to accommodate the young boy.
“They make sure that the costumes aren’t too scary,” Erika said. “They really do understand how serious it is for him.”
And when he’s at school, the staff has to be careful and make sure that Reed doesn’t see the school’s mascot — a hawk— because he’s “petrified” of it, his mom tells the news outlet.
Reed didn’t show any symptoms of the disease until he was around 2 years old. After waking up from a nap, the “happy, healthy little boy” was limping.
The doctor fit him for a cast, but when they took it off two weeks later, Reed could barely walk.
After a series of tests, he was diagnosed with Vanishing White Matter disease.
“His brain is melting away, as this happens Reed has lost the ability to walk, has lost steadiness in his hands, and some speech delays,” his family wrote on a GoFundMe page. “As the disease progresses, Reed could/will lose the ability to use his hands, lose his ability to talk, swallow, see, hear and will eventually cause organ failure and death.”
“Reed will experience a lot of pain and suffering and die at an early age if the cure is not found in time,” the family wrote.
Erika added: “We had so many hopes and dreams for him but they all vanished in that moment. It was really hard to take. I almost felt like a zombie. I was just thinking, ‘What do we do now?’ There’s nothing we can do to help him.”
On August 28, Reed’s family posted on Facebook that they were notified of “some huge movements within VWM Research, clinical trials will be starting very soon we know it.”
But the treatment could cost nearly 2 million dollars.
“A cure is coming and we truly believe that God’s bigger plan for Reed is a part of this cure!” they wrote.