A little girl with a rare, incurable condition endures three hours of pain every week to wrap her in bandages to keep her safe.

Imagine the most painful blister you’ve ever had, multiply the pain by 10, and increase the wound to the size of a tennis ball – this will give you some understanding of what 10-year-old Ciara Paczensky goes through every day. Ciara was born in 2006 with the genetic condition epidermolosis bullosa (EB) where the slightest bump results in Ciara’s skin blistering or shearing off. The condition causes blistering internally as well as externally.

Ciara’s mother, Margaret, said: “The condition is very rare but both my husband and I carry the defective gene although we were unaware of this when we started our family.

“We have an older son, Jonathon, who is fit and well and so had no reason to believe our second child would be any different.

“My pregnancy was normal, as was the birth. It was only when Ciara was passed to us by the midwife that we noticed a mark on the back of her hand. We assumed that it was a birthmark but then realised that it was bare flesh, there was no skin there.”

Margaret and husband Grant, who live in Dartford, were shocked and the staff said they’d never seen anything like it.

One strain of EB is terminal and patients are not expected to reach their first birthday.

Grant said: “We had an agonising 10-day wait for the results, all the time wondering how long we had our little girl for.

“When the results came through it was good news. Although Ciara had the condition that would affect her life forever – it was not the terminal strain.”

Ciara’s care, both remedial and preventative is conducted on a 24-hour basis. She is constantly bandaged to heal wounds that she gets on a daily basis.

Through all the ups and downs, Ciara and her family have had ongoing care, emotional support and respite from ellenor.

In fact, according to her parents, ellenor has become a “fifth member” of the Paczensky family.

Specialist nurses are on hand to advise about Ciara’s complex care needs and the charity also provides much-needed respite for Ciara and 11-year-old Jonathon.

Grant said: “Having a child with a disability that requires around-the-clock attention can be exhausting. The ellenor respite team has helped us tremendously and enabled us to have some time for ourselves and share time with Jonathon, who often gets overlooked in day-to-day life.”

Jonathon also benefited from play therapy when he was starting school, as did Ciara.

Although Ciara’s condition has become easier to manage as she has got older, it is not going to improve. There is no cure for EB and she will require constant care until well into her teens.

“The thought of this is quite daunting for us but made a little easier knowing that ellenor is there to give support,” said Grant. “Ciara’s condition is bad and, to an outsider looking in, it looks near on impossible to cope with, but we have managed to do this because of ellenor.”

Ciara is bandaged from head to toe and every week the bandages need to be changed. As Ciara gets bigger there are more bandages to change and she knows what to expect. It is an extremely painful process, even with pain relief.

An ellenor nurse visits each week to help with the three-hour process and does all she can to make it less traumatic for Ciara.

“Ciara is very weary of getting hurt and so worries about being around people,” says Margaret. “However she loves the team from ellenor. They are one of the family. They help with so much, all the day-to-day stuff that makes a family life run. We couldn’t live life without them. The support we get is as a whole family, not just Ciara.”

Ciara’s family have shared their story to promote ellenor’s work as part of Children’s Hospice Week.