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 (7 years old) is from Alfreton (Dereshire). He suffers from the incurable condition Pityriasis Rubra Pilaris (PRP). This results in constant inflammation, swelling, dry eyes, thickened palms and soles that can crackle 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, seven, 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 Clay (7 years old) from Alfreton (Dereshire), has the incurable condition Pityriasis Rubra Pilaris. PRP causes chronic inflammation and scaling of skin. Dry eyes, thickened palms, soles, and thickened fingers can cause severe pain.

Kai's mother Nikita, pictured, 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 Kai’s mom, as pictured, stated that Kai is a ‘little fighter’ who rarely complains about his conditions and she continues her treatment. In order to increase research and awareness about the condition, she wants to make it a priority to educate people. 

Nikita stated that he was amazed at how seven-year old Nikita can remain so brave and strong about everything and still smile throughout it all. He makes me so proud.

‘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 has pustules and is raw. This can lead to infection. It’s so itchy and uncomfortable constantly for him.

“He has thick, flaky skin all over his head, feet and hands. It can sometimes crack or bleed making it difficult to carry out daily tasks.

In spite of repeated trips to he hospital to help with his painful skin infections, Kai, pictured, has remained optimistic

Kai (pictured) has maintained his optimism despite multiple trips to the hospital for treatment of painful skin conditions. 

Nikita admitted she fears Kai, pictured, will suffer from the rare condition his whole life, because it is incurable

Nikita, shown here, admitted that she worries Kai will be affected by the rare condition throughout his life. 

‘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 6 months old at the time he began to show signs of the disease, including rashes around his neck and arms, as well as a rash on his legs.

His red, itchy skin was not eczema. Doctors thought it was psoriasis or eczema. They kept him on different steroids but it never went away.

The resilient boy, pictured in hospital, started showing symptoms of the conditions at six-months-old

Pictured in hospital: The boy who was resilient began to show signs of these conditions when he was 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

Nikita, Nikita’s stay-at home mother said Kai first started to show symptoms of skin conditions as an infant. 

His skin began to deteriorate at four years of age. The dry patches developed and covered most of his body. Infected pustules then became a serious blood infection that threatened his life.

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.

“We were initially confused, thinking it was going to be easy to solve.

Pictured: Kai began showing symptoms of PRP when he was six-months-old, pictured, with flaky skin appearing on his scalp and skin

Pictured is Kai, six months, showing the first signs of PRP. 

Kai, pictured left with his brother Keo Clark, who does not suffer from the same condition. The causes of PRP are not known

Kai (pictured right) is with Keo Clark who doesn’t suffer from the exact same condition. It is not clear what PRP means. 

Pityriasis Rubra Pilaris is a rare condition that can cause scaling.

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.

These patches may cover your entire body or be applied to specific parts, including the soles of your feet, knees, elbows, and knees.  

This condition is sometimes mistakenly thought to be similar to Psoriasis. 

This can affect both men and women from any race. 

The treatment options available will vary depending upon the individual. You can reduce cracking with emollients.

For fluid replacement and support care, some people might need frequent hospitalizations.

Europe is home to at least 1900 of these conditions.

Source:  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. When I realized how severe it was, it was horrible.

“Mainly, I manage it at home. But the pustules may get infected and it could then enter his bloodstream.

‘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 must now take three drops per day. He also needs to use a steroid cream at least once a week and moisturising cream at least three times daily. Kai is required to bathe in ointments each night.

Kai's skin is covered in red scaly patches that can become infected

When they become infected, the pustules can infect Kai's blood

Picture: Kai’s skin has red, scaly spots that could infect him and cause his blood to become infected. 

Nikita said she is mind-blown by how resilient and brave her seven-year-old son has proved to be through it all

Nikita expressed her amazement at the resilience and courage of her 7-year-old son. 

Additionally, he takes a pain relief pill every day and receives an injection every other week. But even that medication is not enough to keep him from missing weeks of school due to painful flare ups.

These difficult times make it hard for him to continue enjoying the activities he enjoys most, like playing with his brother Keo Clarke (three).

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.

Pictured: Nikita with her Kai, right, and Keo, who is now three, when he was a baby. Kai often misses school when he gets flare-ups

Pictured right: Nikita and her Kai (left), as well as Keo (right), who was three when he was born. Kai is often absent from school due to flare-ups. 

Pictured: Kay sleeping. The seven-year-old takes medication daily and an injection of pain relief medication every two weeks

Kay in her sleep. The seven-year-old takes medication daily and an injection of pain relief medication every two weeks

Pictured: Kai's legs. The boy's flare-ups can last a while, meaning he will miss weeks of school at a time

Pictured: Kai’s legs. Kai’s legs can flare up for a long time, so he may miss weeks of school. 

The seven-year-old was awarded an 'extreme bravery at hospital' certificate from the staff who look after him, pictured

Pictured: The staff caring for the child, aged seven years old, awarded him an award of ‘extreme bravery in hospital’.

Pictured: 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

Pictured: 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.’ 

Pictured: Kay, seven, with his brother Keo. The boys' 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

Pictured is Kay, 7 years old, and Keo, 7. The boys’ 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

Pictured: the painful condition spreads all over Kai's body. Nikita said not enough research is being conducted about the condition

Pictured: The painful condition affects Kai throughout his body. Nikita claimed that there is not enough information available about this condition. 

Pictured: Nikita with Kai and Keo. The stay-at-home mother said reading about stories similar to Kai's is hard

Pictured are Nikita and Kai with Keo. According to the stay-at home mother, it is difficult to read stories like Kai’s.

Pictured: 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

Pictured is Kai and a kid entertainer who dressed up as Shrek for one of his hospital visits. Nikita takes care of her son at home but sometimes he needs professional help to prevent 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

Kai and Nikita are cuddling during his stay in hospital. Nikita explained that Kai misses school quite often but is always keen to return to school once he feels more well. 

Pictured: Kai opening presents while undergoing treatment in hospital. Nikita said she is afraid the seven-year-old will suffer his whole life

Pictured: Kai receiving treatment at the hospital while opening gifts. Nikita stated that she fears Kai’s entire life will be ruined. 

Pictured: the scaly and painful red patches of skin on Kai's belly. Nikita described it as snake skin

Pictured are the red patches on Kai’s stomach that look painful and scaly. Nikita called it 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

Kai is Keo’s big brother. Kai and Nikita are pictured together as babies. Keo is not happy when Kai feels sick. 

Pictured: Kai's back during a flare up. In spite of his painful condition, Nikita said Kai remains strong

Pictured is Kai’s side during an flare up. Nikita stated that Kai is strong despite his pain.