As with any good story, this charity’s journey begins with a real life experience that evolved into something so much bigger. Roald Dahl was one of the world’s most imaginative, successful and loved storytellers, but that’s not the only legacy he left.
Roald Dahl’s legacy is not only that he was a best-loved children’s author, he was also a man who made an enduring mark in medicine. Roald Dahl’s Marvellous Children’s Charity was established in 1991 by the author’s widow, Felicity, shortly after his death. Today, there are currently 76 Roald Dahl nurses caring for over 21,000 seriously ill children across the UK at any one time.
The charity’s nurses work directly with children and with family, supporting them in the community and within the hospital setting. They support children and families affected by conditions which are not often given the attention they deserve, including epilepsy, acquired brain injury, rare diseases, sickle cell and thalassemia.
Dominic (aged 13) is a SWAN child (Syndromes Without a Name), which means he doesn’t have an overriding diagnosis to explain the many issues that he has. He is currently on a few genetic research studies that are trying to map what each gene is responsible for.
Dominic’s mum, Renata: “We are hoping that this will help science catch up with super rare children like him and we’ll eventually know what his condition is and, more importantly, what the future might hold for him. His condition means that he fatigues very easily, and he cannot walk, which means he is a full-time wheelchair user. He has had over thirty surgical procedures, many of them major operations on his stomach and bowel. This means that Dominic relies on a feeding pump to deliver the majority of his food and water. He also has endocrine issues which mean that he has to have medicine and injections daily to help him grow and for his body to balance his hormones. Without a diagnosis we have no idea of his prognosis, so we just live life day to day and deal with issues as they arrive.”
“Dominic is undoubtedly one of the most remarkable children you could ever meet. It often surprises people when I say that, despite everything we have been through, I wouldn’t change a thing about our life so far. It has made each member of our family who we are today, and I believe we are fortunate enough to be able to appreciate what is really important in life because of what we have been through to get here. Being Dominic’s parent has taught me resilience, patience, perspective and the importance of seeing the funny side of even the darkest moments. It has also opened up a world to me that I feel privileged to be part of. I get to work with some of the most passionate, innovative and motivated people who all want to make the world a better place for children like Dominic, people just like the team at Roald Dahl’s Marvellous Children’s Charity.“
“When I’m older, I want to be a comic book author. I have a lot of ideas for new superheroes and villains and would love to see them come to life. I would love to meet Mark Hamill because he voices the Joker and is my favourite voice of the Joker, and he is also, of course, Luke Skywalker!”
What happens when Dominic becomes an adult?
Roald Dahl’s Marvellous Children’s Charity charity also supports young people transitioning from child to adult healthcare services, ensuring young people do not fall through the care gap and can continue to receive high-quality care.
Transitioning from children’s to adult’s health services can be tough, especially when you have a long-term medical condition. That’s why the charity has launched ‘Everyone’s Business’, on International Youth Day, to raise the standard of healthcare being offered to young people transitioning through healthcare services. The campaign seeks to match young people with ‘transition nurses’; they have already funded four. The specialist role is essential in equipping young adults with the tools necessary to feel confident, empowered and educated as they go on to navigate the complex NHS system post childhood.
How can I get involved?
There are plenty of marvellous ways to donate to this charity. See them here. This includes a number of fun and engaging fundraising activities too. For more on the kinds of resources Roald Dahl’s Marvellous Children’s Charity needs, visit their profile here and click on ‘Our Impact’.