Due to a rare cleft disorder caused by a genetic mutation that only affects one in 10 million people, Ethan Kranig, 9, from Prescott, Wisconsin, can’t cry or sweat and only has two fingers on each hand.
Ethan was diagnosed with ectrodactyly ectodermal dysplasia-cleft syndrome (EEC) since birth. The disease is typically spread from parent to offspring, but it’s not what happened in his case.
After Ethan’s birth, neither parent was found to be a carrier of the gene; meaning it was a random genetic mutation when Ethan was conceived.
EEC syndrome is a rare form of ectodermal dysplasia, characterized by clefts at different parts of the body, missing fingers, toes, teeth, tear ducts, and inability to sweat.
Ethan’s mother, Natalie, told Daily Mail: “When he was born, he had a cleft lip and palette, cleft hands, cleft feet, urology and GI issues. Essentially his anus was clefted to his scrotum.” The situation is causing blockage and means he had to have a colostomy bag to collect his waste.
Ethan used colostomy bags until he was old enough to have a surgery to restructure his anatomy and remove the blockage.
Ethan was also born without tear ducts or sweat glands, which his mother explained is the biggest challenge, especially in the hot season. When Ethan overheats he has seizures, so Natalie has to make sure to keep his body temperature low.
Ethan also was born without teeth.
In his nine years of life, Ethan has had 29 different surgeries. His most recent was on April 21, when he needed the procedure because the disease caused him to start going blind. Before the surgery, he was legally blind in his right eye, and had lost 55 percent of vision in his left.
Natalie explained that Ethan grows extra cells in his eyes because they can’t moisten themselves, but then those cells grow over his pupil and cause blindness.
Ethan’s numerous procedures have cost his family a lot of money, but his mother said they’re worth it. Though Ethan was born with the disorder, he acts like a normal boy his age, Natalie explained.
But of all the medical needs of Ethan, Natalie said one of her biggest concerns is keeping Ethan from going blind.
‘Some of the other children we’ve met with his disorder have gone completely blind, and I don’t want that to happen to Ethan,’ she said.
‘It’s been a struggle, and it can be very expensive,’ she said. ‘Especially because it’s so hard to find doctors who are familiar and comfortable treating his symptoms.’
A YouCaring site was set up by Ethan’s family to help raise money for his treatment and numerous surgeries.
Though the symptoms are severe, and will affect day-to-day life, the illness does not impact life span or an individual’s spirit. Ethan’s spirit.