An 11-year-old girl with a rare genetic disorder has defied her condition to make a successful start to life at one of the county’s best secondary schools.

Ciara Paczensky has epidermolysis bullosa (EB), which causes her skin to tear, rip and blister at the slightest touch.

It means she is bandaged constantly from head to toe and they have to be changed frequently, taking up to two hours out of her day.

But despite the added pressure of adapting her medical needs around her new routine at Dartford Grammar School for Girls, she is not letting it hold her back.

Her dad, Grant Paczensky, who describes her as “a trooper”, said: “Ciara has been waiting for this next chapter in her life.

“It was so amazing to go out and get her new uniform, new pens and pencils, and see how happy she is.

“She’s loving the experience so far and we can’t wait to see what she achieves.”

With her condition keeping her from the swimming pool and the sports field, Ciara spends her free time doing artwork, reading and writing.

As her dad says, what she lacks physically she certainly makes up for mentally, as her admission to grammar school proves.

Now she is hoping her new classmates and teachers will help her raise money for a charity dedicated to supporting the search for a cure for her condition, as Genetic Disorders UK prepares for its annual Jeans for Genes Day.

Money raised from this year’s day will go towards a family day for parents with children who have EB, and the Sohana Research Fund team, which is trying to formulate a cure.

Mr Paczensky said: “We get a lot of updates from the fund about what’s new in research and what progress is being made.

“But they also bring to our attention what new dressings are being made.

“So, without them, we’d be taking a step backwards.

“We rely on them for things like that.”

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The early days of Ciara's condition

Ciara’s condition was apparent as soon as she was born, with her dad recalling how nurses at Great Ormond Street Hospital had to treat her as if she was a burns victim.

Initially they feared she would not survive longer than a month, but her fighting spirit saw her pull through.

Mr Paczensky and Ciara’s mum Maggie carried the gene, but neither had any illnesses or disabilities in the family and it took them a year or so to adapt to their daughter’s condition.

Mr Paczensky said: “Ciara has understood it from an early age – as soon as she could walk and talk really.

“She asks all the time, when she’s in a lot of agony and pain, ‘why does it have to happen?’

“It’s hard for a young girl to deal with. No one should have to put up with that at any age, but she’s a trooper, she gets on with it.”

It has certainly been a challenge for Ciara’s parents and older brother Jonathon, but they remain a tight-knit group.

“The hardest thing is explaining to her that it’s not her fault,” said Mr Paczensky.

“We like to say to her that people are looking for a cure for it, which they are, and one day we might be able to make it better for her.

“With a young girl, you’d do anything to take it away from her. I’d take it myself if I could.”

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An average day for Ciara starts at about 6am, with mum Maggie spending up to 45 minutes replacing her bandages before breakfast.

She then sets off to her new school in Shepherds Lane, Dartford, where her parents say she has become something of a celebrity.

Teachers and classmates have helped her settle in and been more than happy to look after her, with someone on hand if a bandage needs changing or if first aid is needed.

Once she gets home after school, her mum changes the bandages again and she settles down for the evening before bed.

As for what the future holds at school and beyond, the family are trying not to look too far ahead.

Mr Paczensky said: “We try to take it day by day. We can’t really look beyond what we’re doing at the moment.”

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Jeans for Genes Day invites everyone to wear their jeans to work or school in return for a donation.To donate to Jeans for Genes online visit jeansforgenesday.org/.