Gabrielius Misurenkovas, from Essex, suffers the genetic disorder recessive dystrophic epidermolysis bullosa
HE lives in agony, his tiny body covered in painful blisters and sores.
Little Gabrielius Misurenkovas is plagued by a rare condition that causes his skin to tear at the slightest touch.
The four-year-old’s body is covered in scars, a reminder of years of nasty blisters.
Their legacy is thick skin that can cause his fingers and toes to fuse together, and joint deformities that can make it difficult for him to move.
Essex-born Gabrielius suffers the genetic disorder recessive dystrophic epidermolysis bullosa (EB).
Kids with the condition are often dubbed “butterfly children” because their skin so delicate it can fall off at the slightest touch.
Mum Jolita, 37, told The Sun Online: “It’s hard – the only way we can help him is to hurt him.”
She’s referring to having to pop the dozens of blisters that cover her young son’s body.
“Sometimes my stomach is churning, but I have to do it or it will get worse,” she explained.
As if little Gabrielius doesn’t have enough to deal with, his condition puts him at very high risk of developing a form of skin cancer, called squamous cell carcinoma.
The disease tends to be unusually aggressive and is often life-threatening.
Other risks are vision loss, infection and malnutrition (the blisters also form inside the mouth and digestive tracts).
Gabrielius’s parents constantly check him for blisters. If they can catch them early enough before they grow, they can limit the damage.
Jolita explained: “Sometimes he will be eating and he tells me he has got one on his tongue.
“I have no choice. I have to deal with it.”
And, in his own brave way, that’s exactly what the four-year-old has learned to do.
He doesn’t see himself as any different.
The youngster from Dagenham, East London, is fanatical about football and loves the sea.
But, he has learned to warn others to be careful around him, often telling his pals, “I’m fragile, please be careful”.
Despite living with constant pain Gabrielius rarely complains.
It’s hard – the only way we can help him is to hurt him
Jolita Cekaviciene
In fact he will continue until he can walk and play no more.
His mum Jolita Cekaviciene, told The Sun Online: “Recently he was limping as he played. I wanted to check him because I could see he was struggling.
“But he refused, he kept telling me it was nothing. He just wanted to play.
“Eventually it got so bad he couldn’t walk on his feet anymore. Only then would he let me check.
“When I looked his legs were so bad and his feet. The blisters were like a big bag on his knee.”
Jolita and Gabrielius’s dad, Linas Misurenkovas, 38, a logistics co-ordinator, want to give their son a full life, but also know the more they do to protect him now, the less affected he will be as he grows up.
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Dad, Linas explained: “We try to keep him as safe as we can. With this condition the damage done while he is a child will last the rest of his life.
“At the moment he doesn’t go to nursery. It’s not worth the risk.
“Even if he were holding a pencil and someone snatched it off him – that motion could tear his skin off.
“Every time he gets injured the tissue damage is so severe it will limit him in the future.
“For us that damage may only last a couple of days but for him – it’s the rest of his life.”
Gabrielius will start school in September and his mum will accompany him every day.
She said: “It’s difficult for people to understand the condition – even someone helping him to change into his PE uniform could cause such damage.”
Linas and Jolita, who also has an older son, Martynas, 17, knew there was something wrong with Gabrielius from the moment he was born.
Linas explained: “His right leg, all the way down, was missing skin. And the skin was missing from one finger too.”
WHAT IS EPIDERMOLYSIS BULLOSA?
Epidermolysis bullosa (EB) is a general term used to describe a group of rare inherited skin disorders that cause the skin to become very fragile.
In people with EB, any trauma or friction to the skin can cause tears and blisters.
EB is caused by faulty genes.
In most cases these are inherited from one or both parents but sometimes the fault occurs spontaneously.
It is a result of not enough collagen being produced in the skin.
The condition is incredibly rare, affecting around one in every 17,000 children born in the UK.
It means, there are currently around 5,000 sufferers living with the disease.
There is no cure for EB, but treatments aim to relieve symptoms.
Most treatments can be done at home, such as popping blisters with a sterile needle, applying protective dressings and avoiding things that make the condition worse.
Gabrielius was born at Queen’s Hospital, Romford, but was quickly referred to Great Ormond Street Hospital, London.
Jolita says: “The pregnancy was perfect. So when he was born we were shocked. We didn’t understand.
“Straight away, the doctors took Gabrielius away.
“The doctors said that in 20 years they hadn’t seen a baby born like Gabrielius.”
It took two further weeks for a diagnosis.
“We didn’t really sleep for the first two years because when we slept he would lie between us.
“We would try to hold him down to stop him rubbing his feet together. That was his habit when he was little. As a result he would wake up having removed all the skin from his feet,”Jolita said.
But the resilient couple found a way to minimise the damage.
“Eventually we put arm bands around his ankles to stop him. That helped,” Linas explained.
Even if he were holding a pencil and someone snatched it off him – that motion could tear his skin off
Linas Misurenkovas
The couple do anything in their power to make life more comfortable for their son.
They are constantly checking and changing his bandages, whatever the time of the day or night.
“Even when I’m exhausted I remind myself this is his future,” said dad, Linas.
“Imagine a really ripe plum. If you touch it the skin splits. Well that’s just like Gabrielius’s.”
And while life is incredibly hard, he pointed out it is a lot better with medical advancements than it would have been for earlier sufferers.
Gabrielius and his parents appear on posters and fundraising packs for the charity which supports children with genetic disorders.
They also star in an online campaign, #dreamsforgenes encouraging schools to sign up for Jeans for Genes Day on Sept 22.
In the #dreamsforgenes campaign, which asks families affected by genetic disorders for their dreams, Linus explained his: “Children like Gabrielius could have a normal life without constant pain.”
Jeans for Genes Day is on Friday, September 22, and everyone is invited to wear jeans to work or school and make a donation.
Sign up for your free fundraising pack here.
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