Zach Skitmore, a 9-year-old boy from England, has been diagnosed with a rare condition that prevents him from feeling physical pain. Upon examination, doctors concluded that Zach suffers from Congenital Insensitivity to Pain (CIP), a hereditary condition caused by a mutated gene carried by his parents.
CIP is an extremely rare disorder, affecting only about 60 people in the United States, while the global incidence is reported to be “one in a million.”
Unfortunately, Zach is one of those affected by CIP. The Skitmore family, living in Norwich, first suspected something was unusual when Zach was nearly a year old. At that time, he had bitten his own tongue without realizing it and did not cry out in pain.
This hereditary condition is caused by a mutated gene carried by his parents.
At the age of 4, Zach dislocated his hip, and doctors had to reposition it after administering anesthesia. No doctor believed that Zach had been sitting comfortably without feeling any pain. They insisted that no one could dislocate a hip without experiencing pain while sitting.
Additionally, Zach’s teachers raised concerns with the family about several unusual incidents occurring at school. Zach had repeatedly injured himself while playing, including a time when he broke his leg and sustained various other injuries.
Zach’s mother shared that she and her husband faced significant challenges in explaining their son’s unusual condition to doctors. She was unaware of CIP until she began researching it.
For six years, Zach’s parents faced skepticism and a lack of serious medical assistance. In fact, the rarity of CIP is such that most doctors in England had never heard of it. The lack of awareness about his pain insensitivity and the helplessness of the doctors caused immense suffering for the family over the years.
Being immune to pain may sound like a superpower. However, it is truly a nightmare for Zach and his parents, who must constantly prevent their son from accidentally injuring himself, especially since CIP has no cure.
Zach’s mother expressed: “We have to check all food and baths to prevent burns, as he cannot perceive how hot the water is. Zach cannot play football, rugby, or any contact sports. We also cannot allow him to participate in activities that may pose a risk. Our efforts to protect our son have left us feeling helpless and distressed.”
Despite their best efforts, Zach’s unlimited pain tolerance has led him to develop Charcot joint disease, a progressive complication that can cause infections, deformities, and may require amputation if left untreated.
Zach was eventually diagnosed with CIP at Addenbrooke’s Hospital in Cambridge after he casually walked around for days with a broken leg. The surgeons in England stated that Zach’s condition had deteriorated to the point where there was nothing more they could do.
However, Zach’s parents are determined to reject that prognosis. The couple recently started a GoFundMe page to raise over $63,000 to help their son receive treatment from a U.S. surgeon specializing in Charcot joint disease.
