FOR little Blake Kenyon everyday activities like walking and even having a hug can prove agonising – causing his skin to tear off.
The five-year-old is forced to spend his summers inside, due to a rare but extremely painful skin condition made worse by the heat and humidity.
As the temperatures drop in Chicago, Blake can finally get outside to play with his friends.
At just three weeks old, the newborn was diagnosed with epidermolysis bullosa simplex – a genetic condition that means any friction can severely damage his skin.
It means everyday tasks, that most of us take for granted, will cause painful large blisters to appear, or rip his skin off.
Tammy Kenyon, 39, mum-of-two, said: “Blake’s case is severe, everything causes him to blister, from walking in shoes to holding a pencil or writing.
“There doesn’t even have to be friction, we endure a lot over the summer because heat and humidity exacerbate his condition.
“When it’s warm his skin gets more tacky and sticks to itself, particularly around his feet, the bends of the elbows, backs of his knees and other areas.
“So at times he will have totally raw areas, where the skin has torn.”
She said the family look forward to autumn and winter, when Blake can finally get to play outside as his skin improves and his wound care treatments take less time.
We do a lot of things in a gentle manner with Blake, including hugging, bathing and playing because it can cause him a lot of damage
Tammy Kenyon
But, despite the cooler temperatures improving his condition, Blake still has to be more careful than his friends as the slightest fall could cause his skin to shear off.
Whenever a blister appears on Blake’s skin, it needs to be pierced open and drained to reduce the risk of infection.
His parents Tammy and Josh, 38, often need to treat the wounds three times a day, as his blisters can refill within hours.
Tammy said: “If I don’t lance and drain his blister they will continue to get bigger, bigger and bigger, which will make a larger surface area that’s prone to infection.
“The largest one he had was half the size of a dollar, the larger the blister is, the longer it will take to heal too, so I always try to treat them as soon as possible.”
Girl, 2, left scarred by blisters from hand, foot and mouth disease that medics thought was ECZEMA
Patients with the condition are often called “butterfly kids” due to their skin being as fragile as a butterfly’s wing.
Tammy said: “We do a lot of things in a gentle manner with Blake, including hugging, bathing and playing because it can cause him a lot of damage.
“We have to be extra careful, I once brushed him with the corner of my nail and that scratch left a blister – it was the worst feeling.
WHAT IS EPIDERMOLYSIS BULLOSA?
The rare skin condition affects around one in every 17,000 kids born in the UK every year.
There are currently around 5,000 people in the country living with the painful condition, according to the NHS.
Epidermolysis bullosa is a general term that describes a group of inherited skin conditions, where the skin becomes very fragile.
In people with EB, any trauma or friction to the skin can cause painful blisters.
There are three main types of the condition, and each describes the part of the skin affected.
Epidermolysis bullosa simplex, the form of the condition Blake suffers, is where blistering occurs in the upper layer of the skin – the epidermis.
This is the most common type of the condition, affecting 70 per cent of sufferers.
It also tends to be the more milder form of the condition.
EB is caused by faulty genes, in most cases inherited from one or both parents.
But sometimes the fault can spontaneouly happen.
There is currently no cure, so treatment aims to relieve the painful symptoms and prevent complications such as infection.
“If someone accidentally stepped Blake’s foot it would cause massive injury and a complete loss of skin on toes or part of the foot, which we have unfortunately experienced before.”
Despite the challenges Blake faces, his family are determined to give Blake a normal life and are overwhelmed by the five-year-old’s courage.
Tammy said: “We take it one day and one week at a time, if I think what it will be like for him in high school, while dating or in relationships it becomes too much.
“With EB children, their skin is so fragile yet their ability to handle the pain every single minute of the day is incredible.
“They are some of the most courageous people you could ever meet.”
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