'His brain is melting away': 5-year-old suffering from rare disease could 'die' from being 'frightened'
A five-year-old boy from Iowa is suffering from a very rare condition where he could die or go in a coma from being scared, according to reports. The boy, Reed Havlik, suffers from Vanishing White Matter disease, a condition which has only afflicted 200 people across the world. Vanishing White Matter disease is a genetic disorder, which affects the nervous system of a person and causes neurological symptoms, according to the United Leukodystrophy Foundation.
Reports state that there is no cure or treatment for the condition. Reed's mother, Erika Havlik, while talking to Fox News, said that her son could go into a coma or die if he suffers any stress on his head, like a bump, a fever and that even being frightened could be fatal for him.
“We have got to be really careful what we expose him to because he could be frightened to death,” Erika told the news outlet. “The stress of it all can speed it [the disease] up. We do celebrate Halloween but only on a really small scale.”
Erika said that the five-year-old dressed up as Mickey Mouse for his school’s party and his classmates and teachers ensured that the child was accommodated.
“They make sure that the costumes aren’t too scary,” Erika said. “They really do understand how serious it is for him.”
The mother of the five-year-old said that even the school's staff is careful and makes sure that the boy doesn't see the school's mascot, which is a hawk, because he is "petrified" of it.
Erika reportedly said that Reed did not start showing symptoms of the condition until he was nearly two-years-old. She said that one day after waking up from a nap, the "happy, healthy little boy” was limping. Although the doctor fit him for a cast, when it was taken off two weeks later, Reed could barely walk. Eventually, after a series of test, the young boy was diagnosed with Vanishing White Matter disease.
Reed's family set up a GoFundMe page to raise funds for a possible clinical trial, which could possibly save him.
The page reads: "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. 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 on the fundraising website.
Reed’s family, on August 28, posted on Facebook, saying that they were alerted about "some huge movements within VWM research, clinical trials will be starting very soon we know it."
However, the treatment could nearly cost two million dollars. Despite the cost, the family is positive that a cure is coming for their darling boy. “A cure is coming and we truly believe that God’s bigger plan for Reed is a part of this cure!” they wrote on Facebook.