My boy's skin tears at the slightest touch – he's a 'butterfly child'

A LITTLE boy's skin is so fragile it can come away at the slightest touch, leaving his mum frantic with worry.

Doctors immediately noticed Gabrielius Cekaviciene has lost skin from his leg when he was born.

He was sent to Great Ormond Street Hospital (GOSH), and later diagnosed with a rare genetic disorder.

His mum, Jolita, said only about 100 children in the UK have the conditions – recessive dystrophic epidermolysis bullosa (RDEB).

They are dubbed "butterfly children", because their skin is so delicate it can fall off like a butterfly wing.

Gabrielius' parents, including dad Linas Misurenkovas, 43, had to be shown how to look after their son's skin.

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

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

To distract himself from the painful condition, Gabrielius' 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.

"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 nine, Gabrielius knows 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."

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, the future is a constant source of worry. She said: "I worry about the future – as Gabrielius' grows bigger so do his wounds.

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

But 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.”

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