Boy, 7 years old is all smiling despite “incurable” skin disease

He has lost his skin, but he hasn’t lost his smile.

A seven-year-old British boy named Kai Clay showed “amazing” strength and a constant smile in the face of an incurable condition in which his skin cracked and shed like a snake.

“It’s amazing that a 7-year-old kid is so strong and brave that he can make everything smile,” Nikita, the mother of a 27-year-old boy, told Kennedy News and the media about his son’s brave fight. Told. .. “It makes me very proud of him.”

Residents of Alfreton, Derbyshire suffer from the very rare skin disorder that causes dry eye, the pyridosis lubrapyralis. Skin irritation and scaling The palms and soles of the feet become thicker, causing frequent cracks and bleeding. A debilitating illness that affects only 1 in 400,000 people can cause fatal complications.

Kai first began to show signs of PRP, only six months after the rash on his arms, neck and legs. Initially thought to be eczema or psoriasis, doctors prescribed steroid cream to the embarrassed Tot. Every time, mysterious pain just recurred.

Things turned horrifying when Tyke turned four and his body was engulfed in horrific pustules, which subsequently caused a life-threatening blood infection.

“It was absolutely petrified,” explained Nikita, who rushed her child to Kingsmill Hospital, where a dermatologist treated him with antibiotics. Subsequent skin biopsies at the Queen’s Medical Center confirmed the diagnosis of an incurable disease.

“We had never heard of it, and his doctor didn’t know anything about it at first, and they can understand him more and get the best treatment. For Kai, who had to make video calls with doctors around the world to be able to help, “said the boy’s distraught parents. “At first, I was really confused because I thought it would be really easy to classify.”

When she discovered the truth about the irreparable nature of PRP, her mother at home “griefed” because she knew that her boy “must deal with this for the rest of his life.” I was overwhelmed. “

Indeed, Kai is in almost constant pain due to his condition.

“Kai peels her skin every day. Her whole body is so flaky that when she wakes up in the morning, her skin is dead everywhere in her bed,” Nikita said. “He has very thick, scaly skin on his scalp, hands, and soles, which sometimes cracks and bleeds, makes him very uncomfortable with just daily activities, and loses a lot of hair. increase.”

“His skin is red, raw, pustular and can be infected. It’s always itchy and uncomfortable for him,” she continued.

In addition, the boy’s eyelids “turned over” and were so red, dry, and sore that they had problems opening and closing, Kennedy News reported.

“It breaks my heart every time, especially because there’s nothing I can do about it,” said Kai’s devastated mother.

To relieve symptoms, Kai receives eye drops 3 times a day, steroid cream 1-2 times a day, moisturizer 3 times a day, and an ointment bath every night. Tyke is also injected with painkillers every two weeks to relieve his discomfort.

Of greatest concern are pustules that may be septic. Nikita said at the first sign of a breakout that he needed to “take him directly to the hospital so that he could send antibiotics to him.”

Despite meticulous dosing plans, Kai often suffers from pain relapses and puts Kibosh in school and other favorite activities.

“He has too much time off school, but he always wants to go there, meet friends and learn. He absolutely loves school,” Nikita said. “It can take weeks for him to be absent from school, because when he relapses, they can last quite a long time and I really don’t know when he feels better.”

Kai’s episode also prevents him from playing with his brother Theo, 3, as much as he wants. Thankfully, at first he was angry that his brother resisted Rough House, but Teo was more and more happy to hug him and see “SpongeBob SquarePants” instead. increase.

Nikita is surprised, for example, that her “little warrior” has successfully dealt with adversity.

“It’s unrealistic how resilient he is and how well he deals with it,” she said. “I can see how hurt he is and how painful everything is, but I couldn’t deal with it.”

Brave parents are currently working to raise awareness about PRP with the goal of discovering cures for debilitating conditions.

“Few people even know it’s a problem,” said Nikita, who believes that a small number of patients means that doctors have little incentive to spend resources on developing PRP treatments. It states.

“I’m in an online group for people with PRP, and everyone is struggling, it’s hard to read through everyone’s story, and it’s hard to know that nothing has been done about it,” she said. Said.