A six-year-old girl from Dartford has to live neck-to-toe in bandages due to a rare disorder that causes her skin to fall off. Reporter ABIGAIL WOODCOCK finds out more.

CIARA Paczensky was born with Epidermolysis Bullosa (EB), a condition that causes her skin to blister or shear off when knocked or bumped.

The disorder affects one in 17,000 children in the UK.

Ciara has to wear bandages every day to protect her from even the slightest bump.

Her mother, Margaret, 44, of Brent Lane said: "She can get open wounds and her throat and eyelids can blister too.

"When she swallows, she can sometimes get blood blisters in the mouth.

"Normal things for children like teeth coming through can be really painful."

The condition severely limits what the youngster can do.

Mrs Paczensky said: "She has one-to-one care at Our Lady’s Catholic Primary School in Dartford.

"PE lessons can be very limited and she is not able to play in soft play areas in case she gets knocked.

"Swimming is another thing she can’t do.

"But she likes her art - drawing and colouring."

Ciara’s parents, who also have a seven-year-old son, Jonathon, were shocked to discover she had the disorder, having never seen the genetic condition before in their family.

Mrs Paczensky said: "When she was born, Ciara had an open wound on her hand and some of the skin on top of her hands was missing.

"There was blistering around her lips and mouth, but because she was a natural birth, nurses thought it could have been caused from the trauma.

"They took her away but five hours later she was wrapped in cling film.

"A biopsy confirmed she had EB."

Every day, a nurse from Northfleet based charity chYps goes to the family’s home to help dress any wounds.

Mrs Paczensky said: "We do a lot of preventative bandaging in case she gets a knock.

"From the neck down she is in bandages.

"We have to check for blisters each morning as they can happen in her sleep when she turns over.

"It’s good to have a nurse with us - we’re very lucky to have chYps’ support."

Bathing Ciara can also be a challenge, sometimes taking her parents up to four hours to wash her.

Mrs Paczensky said: "We do it with great difficulty and a lot of the time we use cleansing wipes.

"But we try and give her a full wash once a week depending on how sore she is - we have to set aside lots of time."

It is only recently that Ciara has started to wonder why she is different to other youngsters.

Her mother said: "She’s getting to the age where she’s asking questions such as ‘why are you not wearing bandages? "Why me?’ "But she takes it in her stride. She is fiercely independent- in one way, she doesn’t know anything different."

She added: "We pray every day for a cure and take every day as it comes."