Ada's Story

Two years ago, as Ada approached her first birthday just before Christmas, her parents Gary and Helen knew something wasn’t right. The poor feeding and listlessness she’d suffered for a few weeks had been put down to a virus. But at a joint first birthday gathering with their ante-natal pals and their band of babies, they could see their daughter was seriously out of step. While Ada had been crawling, standing, sitting and eating like her peers, suddenly she seemed to be going backwards and there, amid the celebrations lined up with other babies her age, it was clear there was a problem. The family's life and work were, on that day and in an instant, turned upside down as they started – via rounds of tests and hospital appointments – to search for answers. “As parents your instinct is to find a solution. You think there must be one, somehow and somewhere…” says Helen.  After 12 horrible months of medical appointments, genetic tests and CT scans, it was confirmed that Ada had a rare genetic condition called Aicardi-Goutières Syndrome which affects the brain, spinal cord and immune system.  “Then came the questions about treatments and symptom management and ways to ease the pain and discomfort,” says Helen. “Days on wards waiting for doctors to do their rounds when we were in hospital. And when we were home, physio appointments, meetings with consultants, and of course the dashes into A&E whenever Ada was struggling, and the journey from waiting room to triage to paediatrics to revisit her medical history and needs, often with doctors and nurses who hadn’t met her before.”  This is not an unfamiliar tale for families whose children are diagnosed with serious and complex conditions and, while in awe of the staff they meet in hospital, parents too often feel lost in the system, becoming experts on their child as they learn about the myriad of treatments and tests, while also feeling overwhelmed by the medical jargon they’re hearing, stressed out by what might follow, and exhausted by extended stays in hospital while co-ordinating the care of other children at home. 

Meeting Roald Dahl Nurse Lucy But the story for Ada changed when she and her family met Lucy, a Roald Dahl Nurse. Roald Dahl Nurses – and there are around 150 of them in the UK caring for over 36,000 children at any one time – are specialist senior nurses based in NHS Trusts across the UK. Nurses like Lucy – who is a specialist for children with medical complexities – are established by Roald Dahl’s Marvellous Children’s Charity who raise funds to provide this bespoke, holistic, ‘make things happen’ kind of care for children and families living with some of the most serious and complex lifelong health conditions.  “Gary and Helen were Ada’s biggest advocates and, when I started in my role, they were under so many health professionals and taking so much information in” says Lucy. “The NHS is pretty amazing in what it delivers in both hospitals and the community, but complex conditions like Ada’s mean a complex journey for the family. My role allows me to help them navigate that, and to be by their side and in their corner and provide some continuity in their life.”

“We had no idea what a Roald Dahl Nurse was or what it would mean to us when we met Lucy,” says Gary. “But within days everything about our experience of her care changed. It was so many little things that made such a huge difference.” “If we felt Ada was struggling and needed help, we’d call Lucy and she’d coordinate things so the right consultants were there waiting to see us, rather than us having to go in and ask for help.”  “I was often home alone, and that’s when doubts would come into my head - about the treatments, or about whether I was doing enough for Ada,” adds Helen. “That can catapult you into a spiral of stress, but instead of sitting down and emailing the hospital or calling in to see if I could get an appointment, I could call Lucy and she’d talk things through and either reassure me and put my mind at rest or go and find the answers to my questions. And she would always tell me what an amazing job I was doing. If we were in hospital, she’d be with us at appointments, and if the doctors thought they should keep us in or send us home or try something new and I wanted to question that, Lucy would have my back and be part of that discussion. She, like me, came to know the intricacies of Ada’s condition and what would benefit her and was always in her corner."

Lucy also offered the most practical help, say the family, like organising urgent prescriptions at the hospital pharmacy so Helen could swing by to pick up medications at the hospital door, to save Ada the discomfort of coming out of the car, into a buggy alongside Reggie and being wheeled across to the pharmacy for the medication. “I even remember when it was my birthday and we were in hospital on the ward, in comes Lucy with a card and gift. Something she knew I’d love. She made me feel seen and valued in a way I find hard to explain even now.” These memories matter, say Helen, because they added up to something which gave her and Gary real confidence in their care of Ada, shifting the dynamics at home where every conversation might be a ‘should we ask’, or’ did we check…’ and every sleepless night worrying what they might have missed. And – by doing that – it freed them up to really enjoy the time they had with Ada. In the Autumn, doctors told the family Ada’s gut wasn’t working properly. “I remember Lucy explained to me gently but clearly that meant it was failing and that meant end of life. She was right there with me in that moment and there to talk to me afterwards. And I trusted her completely. And I can remember the consultant asking me if there was anything I hadn’t done with Ada I wanted to do. And I found myself telling them that we’d always dreamed of getting married and having Ada there as bridesmaid. They both looked at me and the consultant said, ‘why not do it now’. I don’t know how or why but that suggestion gave us the strength to keep going in that moment, for our daughter. Within a week I had a wedding organised, and dresses bought, and family invited. No one could persuade us to wait, even for a week. And there we were walking down the aisle, Ada cradled in her sister Frankie’s’ arms. All her family – everyone who loved her – was there for her and us that weekend. That’s another memory no one can ever take away." Ada passed away in September and there is, says Helen, a sense of relief that she is no longer in pain - but also huge gratitude that her last year was so full of positive time with her family. “There is a real sense of peace that comes from knowing we did everything we could for her, but also that we have no regrets about the life we shared this past year,” says Helen. “We will be forever grateful that we didn’t spend this year queuing up in hospitals or on multiple calls trying to get through to consultants or stressed out and tearful rather than holding her close. And all that is thanks to Lucy." “We decided then that we wanted to get behind this appeal. To help secure more Roald Dahl Nurses, who will transform lives like ours.” Please support our Christmas Appeal by visiting www.roalddahlcharity.org/christmas