Lucy Broom is a Roald Dahl Nurse (Image: RDMCC)
A family whose baby girl was diagnosed with a genetic condition she could not survive has told of the amazing difference a specialist nurse made to their lives.
Gary and Helen Brame responded magnificently to care for little Ada but a dedicated nurse from Roald Dahl’s Marvellous Children’s Charity made a “huge difference”.
Gary and Helen, from Ipswich, first realised that something wasn’t right with their daughter two years ago, just before her first birthday.
The listlessness and poor feeding Ada had suffered for weeks had been put down at first to a winter virus by doctors.
But things got worse and she began having difficulty sitting, standing, or even holding her head up.
Mum Helen Brame, son Reggie, daughter Frankie, husband Gary and baby Ada (died in Sept) . In (Image: RDMCC)
Helen, 34, said: “As parents your instinct is to find a solution. You think there must be one, somehow and somewhere and you start the search.”
The family went through 12 intense and “horrible” months of medical appointments, genetic testing and CT scans as their daughter became more poorly by the week.
Finally, it was confirmed Ada had an incurable condition called Aicardi-Goutières Syndrome which affects the brain, spinal cord and immune system.
Beloved daughter Ada (Image: RDMCC)
Helen said: “Then came the questions about treatments and ways to ease the pain and discomfort.
“Days spent 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.
“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.”
Nurse Lucy Broom with Gary, Ada and Helen. (Image: RDMCC)
Meanwhile, Helen’s husband Gary, 37, a butcher, was dashing back and forth to work and caring for the their other children Frankie, 16, and new baby Reggie, 2, who was born just after Ada fell ill.
The family got a massive boost when they were introduced by the hospital to Lucy Broom, a Roald Dahl Nurse and specialist in children with medical complexities.
She is one of 150 Roald Dahl Nurses who care for 36,000 children in the UK as specialists based in NHS Trusts
They are established in post thanks to Roald Dahl’s Marvellous Children’s Charity who raise funds to provide this bespoke “make things happen” kind of care for children and families living with some of the most serious and complex lifelong health conditions.
Gary said: “We had no idea what a Roald Dahl Nurse was or what it would mean to us when we met Lucy.”Within days everything about our experience of her care changed. It was so many little things that made such a huge difference.”
Helen said: “Anytime we became particularly worried about Ada’s condition we could call Lucy and describe what was happening and get her advice.
“Those conversations saved us from frantic calls to doctors or the hospital, and from being catapulted into a spiral of stress about whether we were doing the right thing.
“Lucy would talk to us and together we’d work out whether Ada needed to go back to the hospital or if it was okay for her to remain at home.”
If it was a trip to the hospital, Lucy would be able to contact the medical teams, coordinating staff so they could all be there ready to see Ada.
Helen said: “And she’d be with us at appointments and part of the discussion about next steps. Like us, she came to know the intricacies of Ada’s condition and what would benefit her, and she was always in our daughter’s corner.”
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Helen and Gary with Ada on their wedding day (Image: RDMCC)
Lucy, 30, said: “Gary and Helen were Ada’s biggest advocates. When I met them, they were under so many health professionals and absorbing so much information. The NHS is pretty amazing in what it delivers, 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.”
But every little thing Lucy did mattered, says the couple, because it added up to something which gave them real confidence in their care of Ada, reducing those dashes to hospital, and shifting the dynamics at home where every conversation might be a ‘should we ask’ or ‘did we check’, and every sleepless night fully of worry about what they might have missed.
Lucy, they say, gave them the freedom to really cherish the time they had with Ada. In the Autumn, doctors told the family Ada’s gut wasn’t working properly.
Helen said: “I remember Lucy explained to me gently but clearly that this meant the end of Ada’s life. She was right there with me in that moment and there to talk to me afterwards.
“I can remember the consultant asking me if there was anything I hadn’t done with Ada I wanted to do.
“I told them 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.
“Within a week we had a wedding organised 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. “
Frankie with Ada at Helen and Gary’s wedding (Image: RDMCC)
Ada died in September and there is, says Helen, a sense of relief that she is no longer in pain and huge gratitude that her last year was so full of positive time with her family.
She said: “There is a 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. And that is thanks to Lucy.
“It is because of her, and in memory of Ada, we wanted to get behind this appeal so more Roald Dahl Nurses like Lucy can help transform lives like ours.”
Dame Joanna Lumley, Patron of Roald Dahl’s Marvellous Children’s Charity (Image: Getty)
Dame Joanna Lumley, patron of Roald Dahl’s Marvellous Children’s Charity
I have, for 15 years, been taken aback by the stories coming out of Roald Dahl’s Marvellous Children’s Charity.
Stories of children living with the most complex and serious health conditions, and of their families searching for answers and navigating treatments and tests and scores of appointments and setbacks and hospital stays throughout their life.
And I have always understood that the Roald Dahl Nurses make an astonishing difference to every child they support by joining families on that journey, collaborating with and co-ordinating health professionals caring for their child, and being the child’s advocate and friend and champion as they go.
But reading Ada’s story I realise just how much of a difference, the kind of difference, the Roald Dahl Nurses make. We all know life is short, and we all know that being really present in the day to day, and being properly connected to those we love,makes our short lives richer and memories of times together (including at Christmas of course) all the more precious.
For families navigating the journey through a child’ serious ill health, staying tuned into family life and connected to their child in a calm and mindful way must feel impossible. Most of us find it hard enough to do that when our laptop is open or a friend calls mid supper.
And then I read Ada and Gary and Helen’s story and saw how, in the worst of times, the best of people came into their life and allowed them to breathe out and be with their daughter. To really focus on her without the weight of those ‘what’s next’ and‘what else could we do’ worries resting on their shoulders 24/7.
Their story shows how Roald Dahl Nurses not only offer emotional and practical support by being the continuous ‘by their side’ person through the toughest of times.
It shows that, as they do that, they give parents peace of mind and families precious time together – and so memories they can hold onto forever.
It is in memory of Ada – who died in September – that Helen and Gary have chosen to share their story and launch this Christmas Appeal.
They know the memories their Roald Dahl Nurse Lucy helped them make. They can take comfort and find joy in theirlast year together with Ada. Lucy Broom was their Roald Dahl Nurse and describes this journey as a complete privilege.
She cleared a path through the system for them, untangling everything was going on, lifting a weight off their shoulders and working as a friend and partner and specialist in their efforts to give their daughter the best of times in her short life.
I am so proud to be the Patron of this charity and am joining them in this appeal to raise funds for more nurses like Lucy across the UK. And you can help make that happen. Please give what you can and together let’s make the difference. Thank you.
Marvin the crocodile, mascot of Roald Dahl’s Marvellous Children’s Charity (Image: RDMCC)
How to donate:
This Christmas, a gift such as £15 would go towards providing the vital specialist care these seriously ill children desperately need.Please give what you can today and your donation will be doubled. Thanks to a generous group including Brioche Pasquier UK, every £1 you donate will be matched up to £30,000.
For example, a £15 gift becomes £30 and 100 per cent of your donation will directly support seriously ill children, none will be spent on administrative or overhead costs.
Please share the gift of hope and make a marvellous difference this Christmas and donate today.
By post: Make your cheque payable to Roald Dahl’s Marvellous Children’s Charity and send it in an envelope to: Roald Dahl’s Marvellous Children’s Charity, 17 Chiltern Business Centre, 63-65 Woodside Road, AmershamHP6 6AA.
Please include a postage stamp and please do not send cash. If possible, please enclose a short note with your contact details and a few words about your donation so we can thank you personally and, if appropriate, get in touch to ask if you’d like to complete a Gift Aid Declaration from.
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By telephone: Call our Supporter Care Team on 01494 890 465.
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If you have any questions please email our Supporter Care Team at .Whichever way you choose to donate, if you’re a UK taxpayer, you can increase the value of your contribution by 25% at no extra cost to you through Gift Aid. Thank you.