Ciara's Story

“I can’t stress enough how much, in the early days, we wouldn’t have coped if it hadn’t been for ellenor. It’s hard to think back to those times, especially the first three years of Ciara’s life: a happy time, but a dark one. We didn’t know where we were going to be a month, or a year, down the track. ellenor saw us through those times – with the respite, the care, and the support they gave us. For our family, it was a lifeline that proved invaluable.”

When Ciara was diagnosed, at birth, with severe epidermolysis bullosa (EB), it shattered Grant and Mags’ world. Neither of her parents had heard of it. Nor were they aware that they carried the gene that, when it occurs in both parents, results in a 25% chance that the child will be born with it – a condition marked by excruciatingly painful, fragile blistering skin.

“It was devastating,” says Ciara’s father Grant: remembering her 2006 diagnosis, when doctors told him and his wife Mags that their daughter wouldn’t survive her first month. 

“We didn’t know what to do or who to turn to.”

Grant and Mags had welcomed their first child, Jonathan, 18 months earlier. Little did they know, they were about to embark on a journey filled with unimaginable challenges. Ciara’s EB demanded relentless, round the clock care and the sheer magnitude of medical equipment needed, forced the family to abandon their Blackfen home and relocate to a larger property in Dartford, a move dictated by the harsh reality of their daughter’s condition.

Soon after the move, Ciara was referred to ellenor by DEBRA, a not-for-profit organisation that supports patients with EB. ellenor, a hospice charity serving Kent and Bexley, provides support for individuals with life-limiting illnesses. ellenor’s Children’s Team looks after patients from infancy up age 17; after that, they’re transitioned seamlessly to ellenor’s Adult Services, or other trusted local care providers thereafter.

From their Dartford residence, ellenor stepped in to care for Ciara: not only changing her bandages, a task lasting up to five hours and needing attention twice weekly, but also guiding dad Grant and mum Mags in mastering this intricate process. ellenor also provided invaluable respite care for Ciara’s parents – something which, as Grant explains, was absolutely vital in those early years.

“ellenor’s respite care allowed Mags and I to focus on other essential aspects like quality time with Jonathan. While he’s been incredibly understanding and supportive, Ciara’s

medical needs have always demanded our constant attention. Respite care gave us the time we desperately needed, as a family, to take some pressure off ourselves.”

Ciara has also benefitted from a variety of therapeutic interventions provided by ellenor such as art therapy and play therapy – and the charity has offered invaluable support to her family in several other ways.

“Everything ellenor has helped us with – from getting a blue badge for parking, to helping us access the benefits Ciara’s entitled to, to liaising with the hospital and organising the right medication – has been invaluable. We’d have been in a bad, bad place without them.”

But the most impactful element of ellenor’s care for Ciara comes down to one thing: Friendship.

“Ciara has loved working with the people here at ellenor – it was her time, as far as she was concerned. An opportunity for her to connect with people outside of our family and share her thoughts with others. The Children’s Team at ellenor treated Ciara not just as a patient, but as a friend and an equal – which was exactly what she needed. She’s had down days, but more up days, and that’s due to the support ellenor provided. Even though Ciara has transitioned away from ellenor’s Children’s services, she continues to nurture strong friendships with former members of the Children’s team going for coffee or going shopping together. The friendships Ciara found through ellenor will last for years.”

It’s hard to overstate how crucial this companionship is for a young woman with Ciara’s condition – one that, in Grant’s words, “affects every aspect of her life”. Ciara is academically gifted but struggled with the social dynamics of secondary school. Yet, even after turning 18, and already loving that newfound independence, Ciara is still unable to do many of the things most teenagers take for granted.

“Ciara’s EB dictates when she wakes up, what time she goes to bed; directs who she can be around, where she can go, and what she can do. Cinema, shopping, all that stuff… Ciara doesn’t have many friends she can do that with. It’s mainly cousins, family, or friends she’s made at ellenor.

“She hasn’t been able to have the life most girls her age have.”

Ciara loves to draw and paint and is a dab hand at crochet. She’s wrapping up her studies, and harbours exciting aspirations for a job in childcare; is making a list of the countries she’d like to see. She’s also, as an 18-year-old, relishing the responsibility of talking to the doctors herself, and becoming more involved with decisions around her care.

But with age, Ciara’s mobility is declining. She struggles to move around the house and relies on a wheelchair for anything more. Her dexterity makes it hard to hold a knife and fork, and the bandages – almost her entire body, from the neck down – still make any semblance of a “normal” life difficult.

Grant knows that there are other families out there in similar positions, and facing circumstances most of us would struggle to comprehend – let alone live through.

So what is his advice for other parents in this situation?

“Reach out, even if you feel you don’t need it. There will be something hospices like ellenor can offer you that you and your family can benefit from. Don’t be too proud to think you might never need this kind of service, either – because you never know. My wife and I didn’t know anything about Ciara’s condition before she was born; we didn’t know what help was going to be available, or where we’d be a year from now. ellenor is there to support people who’ve never come across this kind of stuff before.

“As far as I’m concerned, ellenor is an emergency service: it’s helped our family, and Ciara in particular, through life. Who wouldn’t want that kind of care?”