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"A hug can be agony for Ciara"

Even though her daughter's skin blisters at the slightest touch, Maggie Paczensky, 41, is adamant that she will lead as full a life as possible

Save for her face and head, every inch of our three-year-old daughter Ciara's body is covered in bandages. She has recessive dystrophic epidermolysis bullosa (RDEB), a genetic condition that causes her skin to blister or sheer away at the slightest bump. She has to wear some of her clothes inside out as the seams cause skin damage; she can only eat soft food as her mouth and throat also blister; even blinking can cause her eyes to break out in sores.

It's an agonising condition, constantly painful for her and heartbreaking for myself and my husband, Grant, 36. Although we're adamant we want her to have a normal life and have adapted as best we can to her condition, there are times when I wish she could run around like any other toddler - but we always have to be cautious because even a hug can hurt her.

It's very rare, but both Grant and I carry the defective gene that causes RDEB, although we didn't know that when we started our family. We have an older son, Jonathon, 5, who is well so we had no reason to believe our second child would be any different.

My pregnancy with Ciara was normal, as was her birth at St Mary's Hospital, Sidcup, in January 2006. It was only when we first held her that we noticed a spot of bare flesh on her hand. We showed a nurse and Ciara was taken away for tests. Waiting to hear what was wrong and wondering what our baby was going through was awful.

When Ciara was returned to us six hours later, she was completely wrapped in cling film. Nurses explained that they'd never seen anything like it before and had contacted Great Ormond Street Hospital, which sent out a specialist nurse to take a skin biopsy.

The nurse said it was likely to be epidermolysis bullosa and warned us that there were several strains of it, one of which was terminal. After an agonising ten-day wait the biopsy results came back and it was good news, although Ciara had a condition that would affect her life forever, it wasn't terminal.

It was difficult adjusting to Ciara's needs at first; there was so much to think about along with still caring for Jonathon. A team of community nurses would come to our home to help once a week but the piles of bandages and medication Ciara needed meant our two-bedroom house was too small and we had to move. The thought of leaving the area with the healthcare we relied on was daunting, but in August 2006 we did it.

It was then that we were introduced to EllenorLions children's hospice, Dartford, and they've helped us in so many ways since, we've never looked back.

Each week, two of its respite carers come to our house and take over Ciara's care for a few hours, which means we can spend quality time with Jonathon. One of the hospice's music therapists has also been to our home and worked with both of the children together.
EllenorLions is like a fifth member of our family. I doubt Ciara would be developing as well as she is without their help. It's tough resisting the urge to wrap her up in cotton wool at all times, but the normality EllenorLions' support provides helps give us all the confidence to believe Ciara can lead a happy, full life.