His lack of pain awareness has proved excruciating for the family.
A 9-year-old UK boy has a rare condition that’s rendered him impervious to pain — resulting in him unknowingly walking on a broken leg for days, among other complications.
“I didn’t even know it was a thing until I started researching about it,” the boy’s mother Donna Skitmore, 46, told the Mirror of her progeny’s rare condition.
Her son, named Zach Skitmore, specifically suffers from Congenital Insensitivity to Pain (CIP), a genetic affliction that “inhibits the ability to perceive physical pain,” according to Medline Plus.
Caused by two mutated genes carried by his parents, the ailment often results in an “accumulation of wounds, broken bones and other health issues that may go undetected.”
CIP is exceedingly rare, affecting only around 60 people in the US while the chances of having it are reportedly nearly “a million to one.”
Donna and her husband Steve, 53, who hails from Norwich, Norfolk, first suspected that their son had an infinite pain threshold when he was “nine months old.”
“When he had his jabs as a baby the nurse said she had never seen a baby not react,” the distraught mother said.
Meanwhile, when Zach was 1, he bit through his tongue without noticing, the Mirror reported. He then alarmingly dislocated his hip on a bouncy castle at 4 years old, whereupon doctors popped it back into place sans any anesthetic.
“When he dislocated his hip they didn’t believe that he had done it because no one could sit there with a dislocated hip and not be in agony,” described Donna.
The teacher added, “If something is too hot or too painful, another child would move away, it’s your natural reaction, but he doesn’t have those reactions because he just doesn’t know it’s causing him pain.”
Despite Zach’s unique symptoms, his parents have had a difficult time trying to convince doctors of his condition.
“We were taking him to A&E once every three or four weeks and they were looking at us suspiciously,” Steve, a floor layer, described.
“For six years I was constantly saying he can’t feel pain, but no one believed me,” added his beleaguered spouse. She added that the ailment is “so rare” that most UK doctors hadn’t heard of it.
Zach was finally diagnosed with CIP at Addenbrookes Hospital in Cambridge after he walked around on a badly broken leg for several days.
Being immune to agony might sound like a superpower. However, it’s been a nightmare for Zach and his parents, who have to take pains to prevent their child from unknowingly injuring himself — especially as CIP has no cure.
“We have to check all of his food and his baths so he doesn’t burn himself because he can’t tell when it’s too hot for him,” explained Donna. “He can’t play football, rugby or any contact sports. We can’t let him go on anything like bouncy castles or trampolines because it’s just too dangerous.”
The mother also fears that Zach’s future classmates will find out about her son’s condition and try to “test his limits.”
“It’s hard not to get upset sometimes because you want to protect your child from anything that might hurt him,” Donna lamented.
Despite the parents’ best efforts, Zach’s limitless pain tolerance has resulted in him developing Charcot’s joint, a progressive complication that can cause infection, and deformity and require amputation if left untreated.
Unfortunately, UK surgeons say that Zach’s condition has deteriorated to the point that there’s nothing else they can do.
However, Zach’s determined parents have refused to accept that prognosis. The pair recently started a GoFundMe page with the intent of raising over $63,000 to get him treated by a US surgeon who operates on Charcot’s joints.
“We have found an Orthopaedic Surgeon in the U.S. Dr. Feldman, who can help save Zach’s joints and give him a chance to remain mobile,” wrote Donna on the page. “Our reality is that if we do nothing, Zach is likely to be in a wheelchair for the rest of his life.”
“We’ll do whatever it takes to get him the specialist treatment he needs,” she said.
In an opposite affliction, a UK teen is so deathly allergic to cold that he can’t be outside for more than 15 minutes — even in warm weather — without his skin breaking out into itchy red rashes.
