He’s losing his skin — but not his smile.
A 7-year-old UK boy named Kai Clay has displayed “mind-blowing” strength and ceaseless smiles in the face of an incurable condition that causes his skin to crack and slough off like a shedding snake’s.
“I just find it mind-blowing how a 7-year-old kid can be so strong and brave about it and just smile through it all,” the boy’s mom, Nikita, 27, told Kennedy News and Media of her son’s courageous battle. “It makes me feel so proud of him.”
The Alfreton, Derbyshire, resident suffers from pityriasis rubra pilaris, an extremely rare skin disorder that causes dry eyes, skin inflammation and scaling and thickened palms and soles, which frequently crack and bleed. Affecting only 1 in 400,000 people, the debilitating ailment can result in fatal complications.
Kai first started exhibiting signs of PRP at just 6 months old, when he broke out in rashes across his arms, neck and legs. Initially thinking it was eczema or psoriasis, doctors prescribed steroid creams for the embattled tot — only to have the mystery affliction return each time.
Things took a turn for the terrifying when the tyke reached 4 years old and his body became enveloped in horrific pustules, which subsequently caused a life-threatening blood infection.
“It was absolutely petrifying,” described Nikita, who rushed her child to King’s Mill Hospital, where dermatologists treated him with antibiotics. A subsequent skin biopsy at Queen’s Medical Centre confirmed the diagnosis of the incurable disease.
“We’d never even heard of it, and his doctor initially didn’t know anything about it either and had to do a video call with doctors all over the world so they could help him understand more and be able to get the best treatments for Kai,” said the boy’s distraught parent. “At first we were really confused because we thought it was just going to be something really simple to get sorted.”
Upon discovering the truth about PRP’s irremediable nature, the stay-at-home mom was “heartbroken,” as she knew her boy would have to “deal with this for the rest of his life.”
Indeed, Kai is in near-constant torment due to his condition.
“Kai is shedding skin daily — his whole body is very flaky, so when he wakes up in the morning there’s dead skin all over his bed,” said Nikita. “He has really thick, scaly skin on his scalp, hands and bottom of his feet, so sometimes that will crack and bleed and make it very uncomfortable just to do daily activities, and he loses quite a lot of hair as well.”
“His skin is red, raw and gets pustules, which can get infected. It’s so itchy and uncomfortable constantly for him,” she continued.
In addition, the boy’s eyelids “turn inside out” and get so red, dry and sore that he has trouble opening and closing them, Kennedy News reported.
“It just breaks my heart every single time, especially because there’s nothing I can do about it,” said Kai’s devastated mother.
In order to mitigate the symptoms, Kai receives three eye drops daily, a steroid cream once or twice a day, a moisturizing cream three times a day and an ointment bath every night. The tyke is also injected with painkillers every two weeks to help ease his discomfort.
Most concerning are the pustules due to their blood-poisoning potential. Nikita said that at the first sign of any breakouts, she has to “take him straight to the hospital so they can pump antibiotics into him.”
Despite the meticulous medication regimen, Kai frequently suffers extended pain flareups that put the kibosh on school and other favorite activities.
“He has a lot of time off school when it’s too painful for him but he always wants to get in there, see his friends and learn; he absolutely loves school,” said Nikita. “Sometimes it can be a few weeks that he’s off school because when he has flare-ups they can last quite a while and you never really know when he’s going to feel better.”
Kai’s episodes also prevent him from playing with his little brother Theo, 3, as much as he’d like. Thankfully, while initially upset at his big bro’s reluctance to roughhouse, Theo has become increasingly content to give him cuddles or watch “SpongeBob SquarePants” instead.
Nikita, for one, is amazed at how well her “little warrior” has handled adversity.
“It’s unreal how resilient he is and how well he deals with it all,” she said. “I can see how much he’s hurting and how sore everything is and I couldn’t cope with that.”
The brave parent is currently working to spread awareness about PRP with the goal of discovering a cure for the debilitating condition.
“Not a lot of people even know it’s a thing,” said Nikita, who believes that the low number of sufferers means there’s little incentive for doctors to devote resources toward developing PRP treatments.
“I’m in an online group for people with PRP and everyone is struggling and it’s hard to read through everyone’s stories and know that nothing is being done about it,” she said.
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