Gabrielius' story - Jeans for Genes

Gabrielius' story

Gabrielius suffers with the genetic disorder Recessive Dystrophic Epidermolysis Bullosa. This means when his skin comes into contact it blisters. As those blisters heal, they leave severe scarring which can result in fusion of the fingers and toes and joint deformities which restrict movement.

Children with Gabrielius’s condition are often dubbed ‘Butterfly Kids’ because if you touch them their skin comes off.

As if that weren’t enough to deal with, young adults with Gabrielius’s condition have a very high risk of developing a form of skin cancer called squamous cell carcinoma, which 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).

But deal with it he does. Gabrielius, who is from Dagenham, east London, doesn’t see himself as any different. He is fanatical about football and loves the sea.

However, he has learned to warn others to be careful around him, often explaining ‘I have blisters, I’m fragile. Please be careful’.

Despite living with constant pain Gabrielius, who is only four years old, very rarely complains. In fact he will continue until he can walk and play no more.

Gabrielius’s whole body is covered in bandages and whenever he goes outside he wears gloves to protect his hands.

It is an incredibly cruel disorder. For the worst damage is done when sufferers are children. Just when they are learning to navigate the world and want to run around the most.

It is clearly quite a challenge for Gabrielius’s parents. They want to give him a full life, but also know the more they do to protect him now, the less affected he will be as he grows up.

His dad, Linas, 38, logistics co-ordinator, explains: “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. We know he is going to get damaged but we just have to do everything we can to limit that.

“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 next September and his mum will accompany him every day.

As she says: “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 have an older son, Martynas, 17, knew there was something wrong with Gabrielius from the moment he was born.

Linas explains: “His right leg all the way down was missing skin. And the skin was missing from one finger too.”

Gabrielius was born at Queen’s Hospital, Romford, but was quickly referred to Great Ormond Street Hospital.

Jolita says: “The pregnancy was perfect. So when he was born we were shocked. We didn’t understand. Straight away, the doctors took Gabrielius and left us.

“The doctors said that in 20 years they hadn’t seen a baby born like Gabrielius.”

It two further weeks for a diagnosis.

“Our lives changed completely when Gabrielius was born.

“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 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 says.

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 explains.

It is clear that Linas and Jolita would do anything in their power to make Gabrielius’s future more comfortable.

Linas, 38, a logistics coordinator, continues: “We are constantly checking, changing his bandages. Even in the middle of the night – even when I’m exhausted I just remind myself this is his future. I need to get up and check him, take care of him.”

Without any hint of pity Linus states: “We sacrifice everything for him.”

Linas explains the condition: “Imagine a really ripe plum. If you touch it the skin splits. Well that’s just like Gabrielius’s.”

And Linas is quick to point out that while life is incredibly hard, it is a lot better with medical advancements than it would have been for earlier sufferers.

Linas says: “Gabrielius took Oramorph (a morphine derivative) for the first few months of his life to help him tolerate the pain. Now his parents try to manage his pain with Paracetamol. There are also real advancements in the type of bandages that are available now.”

While we talk Jolita notices a blister has come up on the back of Gabrielius’s hand. She deftly takes out her medical kit, removes a needle, pops the blister and uses a compress pad to cover the area, then disposes of the used needle all within seconds while continuing the interview.

Before they leave Jolita changes Gabrielius’s outfit and shows me his leg from knee down under his bandages.

His little limb is red raw as if he has been burned. But Gabrielius doesn’t even flinch.
For this little boy is a fighter and thankfully he has parents who will do everything they can for his future.

They go off into the night without one shred of self-pity and a little black dog looking out after his new friend.