Roald Dahl’s Marvellous Children’s Charity are the charity partner for this year’s Chariots of Fire event, organised by RunThrough and in partnership with hcr hewitsons

May 15, 2025

One of the first to volunteer to support was the Brame Family from Ipswich, who say a Roald Dahl Nurse transformed their daughter’s short life and who are now campaigning to raise funds for the charity.  We met with them to find out more and you can see their story in this award-winning film.

“We had no idea what a Roald Dahl Nurse was or what it would mean to us when we met our Roald Dahl Nurse Lucy.  But within days everything about our experience of Ada’s care changed…”

Ada’s story

Two and a half years ago, as Ada Brame approached her first birthday, 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.

Gary and Helen Brame live and work in Ipswich but their 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.

But fast forward past those 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.

“It saw us staying in hospital – here in Cambridge at Addenbrooke’s and in Ipswich – and then, 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.

But the story for Ada changed when she and her family met Lucy Broom, a Roald Dahl Nurse based in Ipswich who was assigned to her care and who transformed the family’s experience of what would happen next.

Lucy Broom brings to her role not only a mass of experience in neonatal care, hospice care, intensive care and general paediatrics, but also an understanding that for parents like Gary and Helen whose child was born well and then became unwell, the world they find themselves in seems alien.

“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,” says Lucy. “My role allows me 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,” says Gary.

“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.”

“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. I trusted her completely.”

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.

Ada passed away last 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.”

Read more or become a volunteer at the Chariots of Fire – Chariots of Fire 2025 Roald Dahl’s Marvellous Children’s Charity chosen as charity partner for Chariots of Fire Relay Race 2025