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Boy, 9, can't play football with friends as his skin tears at the slightest touch

Like any expectant mum, Jolita Cekaviciene was excited to finally meet her son after a 'perfect' pregnancy.

But just minutes after Gabrielius was born, doctors took him away as they noticed missing skin from his right leg.

He was quickly referred to Great Ormond Street Hospital (GOSH) where two weeks later he was diagnosed with a rare genetic disorder.

Kids with recessive dystrophic epidermolysis bullosa (RDEB) are often dubbed "butterfly children" because their skin is so delicate it can fall off at the slightest touch, like a butterfly wing.

An estimated 100 children in the UK have an RDEB diagnosis.

Gabrielius's parents, including dad Linas Misurenkovas, 43, had to be shown how to look after their son's skin and did their best to make him comfortable, despite the difficult reality of this rare condition.

'The only way we can help him is to hurt him'

The Dagenham family have to change his bandages at least three times a day and pop the dozens of painful blisters on Gabrielius' skin.

It is a painful process but vital to stop wounds from becoming infected.

His parents must pop blisters that have formed with a needle, sometimes using more than 20 needles a day.

To distract himself from the pain, Gabrielus' watches the TV or plays on the PlayStation.

Jolita explains: "The first two years were really hard as you had to watch him constantly – even rubbing his eyes could cause painful blistering.

Mum Jolita with Gabrielius and his Dad Linus

 Jolita Mum Jolita with Gabrielius and his Dad Linus

"When that little he couldn't even tell us how much pain he was in or where he was hurting.

"It's hard - the only way we can help him is to hurt him"

Now a high-spirited nine-year-old who loves Lionel Messi, Lego, and speaks three languages, Gabrielius is aware of how his condition makes him different from other children.

"I can't do a lot of dangerous things like wear proper football boots, ride a bike without stabilisers, or eat school lunches as the food is too hard," he said.

"I couldn't play by myself on the playground in case I fell over… I do try to be careful, but sometimes I don't think about it, and just about the fun, but then I hurt myself by accident".

'I might finally be able to play football'

There is currently no effective treatment and the condition gets worse over time, with most children reliant on a wheelchair as they move into their teenage years.

Many of those with an RDEB diagnosis will also go on to develop aggressive life-threatening skin cancer in adulthood caused by the accumulated damage to their skin.

For Jolita, his main caregiver, the future is a constant source of worry.

"I worry about the future – as Gabrielius' grows bigger so do his wounds," she said.

"He is in year five now and it isn't long until he is in secondary school and then a teenager."

But there is some hope - as researchers from GOSH have begun the largest ever stem cell clinical trial to help children with EB.

The study, in collaboration with clinicians from Birmingham’s Children’s Hospital, is aiming to treat 36 children with infusions of stem cells derived from umbilical cord tissue.

It is hoped these infusions will reduce pain and inflammation for months at a time.

Dr Anna Martinez, study chief investigator, said: "RDEB is a devastating disease and treatments cannot come soon enough.

"Following the encouraging results from our previous study, we have been working at a great pace together with our collaborators to get this new study up and running.”

When the chance to take part in the EB trial arose, Jolita hoped that Gabrielius would be eligible.

"I know it won't make RDEB go away, but if it might even lessen some of his wounds, redness, or pain during the day, it would be amazing for Gabrielius," explained Jolita.

If successful, this new stem cell treatment could change both Gabrielius' and Jolita's lives.

"He would have more time in the day, could play with his friends as is normal, and I could stop saying 'Gabrielius be careful' and 'don't do that' a million times a day," she added.

"I feel pretty excited as if I can get rid of this EB I can do nearly anything that I want, like play football in a real team," said Gabrielius.

Reference: My London: Lucy Williamson

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