Roald Dahl Nurse Nurse Lucy with Ada and her family (Image: Roald Dahl’s Marvellous Children’s Charity)
Generous Express readers have helped a children’s charity raise over £20,000 thanks to our Christmas appeal.
People rallied together to give £10,000 to the Roald Dahl’s Marvellous Children’s Charity – which was matched by bakery firm Brioche Pasquier.
Louise Griew, chief executive of the charity, told how she has been touched by the feedback from readers about the work they do.
She said: “In my role we’re often focused on numbers – the 150 nurses we have, the 36,000 children they care for, the thousands of children who don’t have this support, the money we need to make to change that,” she explains.
“But it is in the individual stories – stories like Ada’s – that inspire me, and which drive my team in the work they do. We believe every seriously ill child should have a Roald Dahl Nurse like Lucy, and it is appeals like this that help us move nearer to that goal. The more people talk about the work we do, and share the stories they’ve read, the more positive difference we can make to families around the UK.
Roald Dahl’s Marvellous Children’s Charity has raised £20,000 (Image: Roald Dahl’s Marvellous Children’s Charity)
“We want to thank Express readers for being part of our story this Christmas and understanding how vital this work is. We do hope you’ll be able to follow our charity and see the difference you have made as we move forward in 2025.”
When we launched the appeal back in November, the first family we featured was the Brames in Ipswich.
They launched our national Christmas fundraiser by sharing the story of their daughter Ada, who died last September.
They felt that their last year with Ada was transformed by the support of a Roald Dahl Nurse.
Gary and Helen Brame were introduced to their nurse Lucy Broom when their baby daughter was diagnosed with an incurable condition called Aicardi-Goutières Syndrome, which affects the brain, spinal cord and immune system.
Months of tests and hospital visits searching for a reason for her ill health, turned – post-diagnosis – into stressful hospital stays, physio appointments, meetings with consultants and dashes into A&E whenever Ada was struggling.
Roald Dahl’s Marvellous Children’s Charity nurse Lucy Broom (Image: Roald Dahl’s Marvellous Children’s Charity )
And, in between times, constantly worry about whether they should be doing things differently, or what the new treatment might mean, or questions they felt they should have asked at the last appointment.
Gary, 37, said: “But all that changed when we met Lucy. We had no idea what a Roald Dahl Nurse was or what it would mean to us, but within days everything about our experience of care changed. It was so many little things that made a huge difference.”
Helen, 34, added: “Any time we became particularly worried about Ada we could call Lucy and get her advice.
“If Lucy did think we needed to go into hospital she would contact the medical teams and co-ordinate staff so they’d be ready.
“She’d be with us at appointments and part of the discussion about next steps. Like us, Lucy came to know the intricacies of Ada’s condition and what would benefit her, and she was always in our daughter’s corner. Having her in our life gave us the freedom to focus on Ada and really cherish our last months with her. We will always feel the benefit of that. Never forget the difference it made to us then, and to how we remember her.
“We can’t quite believe the warmth of the Express readers. The support they’ve shown us and the support for what we – and the charity – are trying to do. We will be spending 2025 continuing our campaign to share the story of Roald Dahl’s Marvellous Children’s Charity and the work it does. To make sure every family like ours has a Roald Dahl Nurse like Lucy.”
By Lucy Broom, Roald Dahl nurse
When I saw the opportunity to become a Roald Dahl Nurse working with and for children like Ada with the most serious and complex medical conditions, I knew this was my next step and what I wanted to do. It has always been nursing for me, since I started out over 10 years ago. I grew up with family members who were nurses and would hear what they were doing each day and the difference they made and I wanted the same. So I trained and, since qualifying, have worked in neonatal care, hospice care, intensive care, and general paediatrics.
But this role, this charity, gives me the freedom and time to support and connect with and advocate for the most seriously ill children and their families in a bespoke, collaborative and ‘make things happen’ way. I can turn what can seem like mountains on their journey into molehills they can navigate as they move forward. I will forever be grateful I was able to do that for Ada and her family.
I’m one of around 150 Roald Dahl Nurses across the country and have a caseload of families, all with different needs. Some days I can’t catch my tail I am in so many clinic appointments, or I might be attending multi-disciplinary team meetings, helping create care plans, or chasing test results. Other days I might spend most of it with the child and their family – at home or in hospital. I have the chance to signpost families to Roald Dahl’s Marvellous Children’s Charity support network, too, which offers families the chance to meet together, or to access emotional or practical support. The fallout from that is so positive, for them and for their children.
When a child has a complex illness it brings with it a complex journey. These children are looked after beautifully in the community by an extensive team of community nurses, community doctors, GPs, hospice teams and specialist therapy teams. But my role as a Roald Dahl Nurse allows me to provide continuity on that journey as they move from one specialist to another, or one ward to another. They very nature of these most serious conditions means families can be under multiple health professionals and have so many appointments to attend and so much information to take in and so much on their plate caring for their child. They are not only fearful about the long term, but are facing, week by week, decisions like ‘should we take them to A&E in case’, or ‘were we right to agree to those test’ or ‘what did we forget to ask at that appointment…’. And they can be in and out of dozens of appointments each month. I am constantly amazed how they do it. It’s like they have a superpower.
My job allows me to take some of that stress away. No day is the same, but each day it feels like a complete privilege to be on this journey with them all. I am an extra pair of ears in appointments, and someone to talk through what was discussed afterwards. I can support families as they make decisions about treatments or surgeries. I am here when they have questions. Instead of emailing a consultant’s secretary and waiting for an appointment, they can ask me. If they need to speak to a number of specialists about next steps, I can bring those specialists together in the room (or on Zoom) to save time and to join up the process. As NHS Trusts like mine have embraced my role, professionals will reach out to me to go over a change in medication or feeding plan or escalation plan, meaning it’s one less phone call for the parents. I can communicate what’s being suggested to them when we meet and talk it through and answer their questions. I don’t always have all the answers, but I am in the right place to find them instead of leaving families to search themselves, or to sit and worry. And that can save so much time for them, time they can use to be with their family. To be in those memory making moments where they can breathe out and be together.
Helen and Gary tell their story and the difference Roald Dahl’s Marvellous Children’s Charity made to them so powerfully. And they are not giving up in their mission to help raise funds for more Roald Dahl Nurses. I am humbled and inspired by what they are doing and want to thank Express readers for their support for our work – and for all the families and nurses they’ve met across the last six weeks of this Appeal.