Mother reveals her son, 7, has ‘mind-blowing strength’ as he keeps smiling despite rare condition that makes his skin crack and fall off ‘like a snake’
An ‘extremely brave’ boy of seven suffers from an agonising condition that sees his skin crack and fall off ‘like a snake’ – but it doesn’t stop him always smiling.
Kai Clay, sewe, from Alfreton, Derbyshire, has the rare and incurable condition Pityriasis Rubra Pilaris (PRP) that causes constant inflammation and scaling of the skin, dry eyes and thickened palms and soles, which often crack and bleed.
The condition is believed to affect only one in 400,000 people and puts him at risk of life-threatening blood infections, leaving his mum Nikita Clay ‘heartbroken’ at the thought of him having to deal with it for his entire life.
However she admits her ‘little warrior’s’ resilience ‘blows her mind daily’ as he battles on – rarely complaining and always smiling even from his hospital bed when taken in for treatment for infections.
The 27-year-old stay-at-home mum, who compared her son’s condition to a snake shedding its skin, is now calling for more awareness and research into the condition in the hopes of finding a cure for her son.
Kai Clay, sewe, from Alfreton, Derbyshire, has the rare and incurable condition Pityriasis Rubra Pilaris (PRP) that causes constant inflammation and scaling of the skin, dry eyes and thickened palms and soles, which often crack and bleed
Kai’s mother Nikita, op die foto, said her ‘little warrior’ rarely complains about his condition and soldiers on through treatment. She wants to raise awareness on the condition in order for more research to be done
Nikita said: ‘I just find it mind-blowing how a seven-year-old kid can be so strong and brave about it and just smile through it all. It makes me feel so proud of him.
‘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.
‘His skin is red raw and gets pustules, which can get infected. It’s so itchy and uncomfortable constantly for him.
‘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.
In spite of repeated trips to he hospital to help with his painful skin infections, Kai, op die foto, has remained optimistic
Nikita admitted she fears Kai, op die foto, will suffer from the rare condition his whole life, because it is incurable
‘His eyelids also turn inside out and go really red, dry and sore to the point that it’s really hard to open and close his eyes.
‘It just breaks my heart every single time, especially because there’s nothing I can do about it.
‘It’s unreal how resilient he is and how well he deals with it all – I can see how much he’s hurting and how sore everything is and I couldn’t cope with that.’
Kai was six months old when he first started showing symptoms of the condition, with rashes on his neck, arms en bene.
Doctors believed it was just eczema or psoriasis as his sore, red skin flared up on and off and kept prescribing him with different steroid creams but it always came back.
The resilient boy, op die foto in die hospitaal, started showing symptoms of the conditions at six-months-old
Stay-at-home mother Nikita said she first believed the condition would easily be sorted when Kai started showing symptoms of a skin condition as an infant
At four years old his skin got worse – the dry patches spread to cover most of his body and became covered in infected pustules that developed into a life-threatening blood infection.
He was checked over by a dermatologist at King’s Mill Hospital and treated with antibiotics before a skin biopsy at Queen’s Medical Center finally confirmed the diagnosis of the incurable condition, PRP.
Nikita said: ‘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.
‘At first we were really confused because we thought it was just going to be something really simple to get sorted.
Op die foto: Kai began showing symptoms of PRP when he was six-months-old, op die foto, with flaky skin appearing on his scalp and skin
Kai, pictured left with his brother Keo Clark, who does not suffer from the same condition. The causes of PRP are not known
The Pityriasis Rubra Pilaris (PRP), the rare condition causing scaling of the skin
Pityriasis rubra pilaris (PRP) is a name given to a group of skin conditions that cause reddish-orange coloured scaling patches with well-defined borders.
The patches can cover the entire body or isolated parts including the palms, elbows, knees and soles.
Die toestand, the cause of which is unknown, is often mistaken for similar skin conditions like Psoriasis.
It can equally affect men and women of any race.
Treatments vary depending on the sufferer. Emollients can be used to reduce cracking.
Some people may require frequent hospital treatment for supportive care and fluid replacement.
Ten minste 1,900 cases of the conditions have been recorded in Europe
Bron: Rare Diseases
‘But when I sat down and spoke to the doctor he explained how rare the disease is and that there isn’t a cure, so there isn’t going to be a long term fix.
‘So then I was heartbroken for Kai knowing he’s got to deal with this for the rest of his life. It was awful when I actually realised how serious it was.
‘Mainly I deal with it at home but the pustules can get infected and then it can go into his blood.
‘He’s had a blood infection once and it was absolutely petrifying so if he ever gets the pustules I take him straight to the hospital so they can pump antibiotics into him.’
Kai now has to have three eye drops a day, a steroid cream once or twice a day, a moisturising cream three times a day and a bath in ointments every night to manage his condition.
Op die foto: Kai’s skin is covered in red scaly patches that can become infected and in turn infect his blood
Nikita said she is mind-blown by how resilient and brave her seven-year-old son has proved to be through it all
He also has a tablet daily and an injection every two weeks of pain relief medication but even with that he often misses weeks of school at a time during painful flare-ups.
During these difficult periods he also struggles to do things he usually enjoys, including playing with his little brother Keo Clarke, drie.
Nikita said: ‘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.
‘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.
‘He’s so strong but when it’s bad he’ll just kind of slump and want to cuddle and relax.
Op die foto: Nikita with her Kai, reg, and Keo, wat nou drie is, when he was a baby. Kai often misses school when he gets flare-ups
Op die foto: Kay sleeping. The seven-year-old takes medication daily and an injection of pain relief medication every two weeks
Op die foto: Kai’s legs. The boy’s flare-ups can last a while, meaning he will miss weeks of school at a time
The seven-year-old was awarded an ‘extreme bravery at hospital’ certificate from the staff who look after him, op die foto
Op die foto: Kai in hospital. Despite everything he puts up with and misses out on, the ‘little warrior’ powers through all of his bad days and treatment with a big smile on his face
‘Keo and Kai have a great bond and love playing together so when Kai is unwell Keo gets upset that he doesn’t want to play.
‘But as he’s getting older he’s understanding more and will just give him cuddles and they’ll sit and watch Spongebob together instead.’
Despite everything he puts up with and misses out on, the ‘little warrior’ powers through all of his bad days and treatment with a big smile on his face.
The mum is now calling for more awareness and research into her son’s rare condition, in the hopes of finding a cure for him and other sufferers of PRP.
Nikita said: ‘Not a lot of people even know it’s a thing and there isn’t enough research because it’s that rare.
‘There’s not enough people that have it for someone to come up with a cure because there’s not enough money in it.
‘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.’
Op die foto: Kay, sewe, with his brother Keo. Die seuns’ mum is now calling for more awareness and research into her son’s rare condition, in the hopes of finding a cure for him and other sufferers of PRP
Op die foto: the painful condition spreads all over Kai’s body. Nikita said not enough research is being conducted about the condition
Op die foto: Nikita with Kai and Keo. The stay-at-home mother said reading about stories similar to Kai’s is hard
Op die foto: Kai with a child entertainer dressed as Shrek during one of his hospital visits. Nikita treats her son at home, but he sometime needs more professional treatment to avoid infections
Nikita cuddling Kai during one of his stays in hospital. Kai has to miss school often, but he always wants to go once he feels better, Nikita said
Op die foto: Kai opening presents while undergoing treatment in hospital. Nikita said she is afraid the seven-year-old will suffer his whole life
Op die foto: the scaly and painful red patches of skin on Kai’s belly. Nikita described it as snake skin
Kai is a loving big brother to Keo, pictured as a baby with him and Nikita. Keo does not like when Kai is feeling poorly
Op die foto: Kai’s back during a flare up. In spite of his painful condition, Nikita said Kai remains strong