Zach Skitmore, a 9-year-old boy from Norwich, in Norfolk, UK suffers from a rare genetic condition that makes him immune to pain. That may sound like a real-life superpower, but in reality, it only makes him more vulnerable.

Zach’s parents started noticing something strange about his reactions to pain very early on. When he was just an infant getting his first shots, he didn’t so much as squeak when the nurse poked him with the needle. At age one, he bit through his tongue without even realizing, then, when he was four, he dislocated his hip on a bouncy castle and had it popped back in without any kind of pain relief. When he was six, he broke his leg and walked on it for three days before anyone noticed it was broken. Unfortunately, not being able to feel pain isn’t the same as not getting hurt, and all this physical abuse has already taken a heavy toll on Zach’s body.

Photo: Towfiqu Barbhuiya/Unsplash

“Whilst being completely pain-free might sound like a dream, for Zach and others with this condition, it is far from it,” the 9-year-old’s parents said. “Pain is an important signal. It lets us know when our bodies need extra care. When we sense pain, we pay attention to our bodies and can take steps to fix what hurts. Pain also may prevent us from injuring a body part even more.”

Zach’s inability to feel pain is caused by an extremely rare medical condition known as Congenital Insensitivity to Pain (CIP). This condition is in turn caused by his parents carrying two specific mutated genes, which is so rare that the risk of suffering from CIP is “almost a million to one”, according to Zach’s father.

Before Zach’s insensitivity to pain was finally diagnosed, at age 6, his parents struggled to convince doctors that the boy never complained when sustaining physical harm. They didn’t know such a condition existed, and because it was so rare, neither did most physicians.

“Alarm bells were ringing early on, we were taking him to A&E once every three or four weeks and they were looking at us suspiciously,” Zach’s father, Steve, told The Mirror. “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. They popped it back in while he was awake, without any gas and air or anything and the doctors were in disbelief.”

Zach’s parents said although Zach’s condition may sound like a superpower to many people, in reality, his immunity to pain only makes the boy more vulnerable to trauma. Being able to feel when something is too painful to bear, helps us stay safe, but that doesn’t apply to people like Zach. He doesn’t have any reaction to pain, so he just hurts himself even more without knowing.

“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 boy’s mother said. “It’s hard not to get upset sometimes because you want to protect your child from anything that might hurt him or cause him pain.”

 

Unfortunately, at such a young age, Zach Skitmore has already sustained untold damage to his own body without realizing it, and the consequences are severe. He has been diagnosed with Charcot’s joint, a progressive disease caused by repeated sprain or injury, among other factors. Doctors in the UK are unable to treat the 9-year-old, but his parents are trying to raise money to take him to the US where one surgeon is operating on Charcot’s joints.

“The NHS doctors in the UK have done everything I think they know how to do but it’s essentially got to the point where they’re saying they can’t do anything else for him and we can’t just accept that,” Zach’s parents said. “We’ll do whatever it takes to get him the specialist treatment he needs.”

Congenital Insensitivity to Pain (CIP) is so rare that only 60 cases have been documented in the United States.