Maisie's Story

The difference a Roald Dahl Nurse makes…

At the Reid’s house in Kent, there is no escaping the magical sound of movie music and the family embraces it – at home, at hospital, going to school, on car journeys to the beach, you name it – because they are key to the daily experience of their daughter Maisie. This super brave and sassy five-year-old loves it. Very likely her favourite soundtracks played all the way to London when this Christmas Maisie and her mum were invited to meet Her Majesty The Queen at a special Christmas tree-dressing at Clarence House. But more of that in a minute. Maisie has struggled with ill health for most of her life, but it was only after she was diagnosed with Rett Syndrome just before last Christmas that her family have properly understood the day-long breathing problems (hyperventilation mixed with slow breathing), why she can’t walk, talk, pick up or hold things, and what might happen in the future. This is a neurological condition that affects all aspects of Maisie’s life, and which can never be cured. It was a long journey to get here. Her mum Holly reported early signs of concerns at the routine one-year check-up. Maisie, she says, was talking and using her hands then, but not hitting the usual milestones, including in the development of her speech. It wasn’t until Maisie was blanking out and Holly took her to A&E that a doctor said he thought there was a bigger picture and that they should do some tests. The incident, they realised later, was the start of Rett-related epilepsy and an absence seizure. “It was a scary place then,” Holly says, “not knowing what they were going to find and what it would mean – the epilepsy, the development delay, the genetic testing. I think at that one-year check-up they sowed the seed that it was my doing, my fault. I remember tears streaming down my face and not knowing the answers in these early stages, not understanding what they were looking for. Your mind goes into overdrive and the tears keep coming. Was it the birth? Is it me? Is it something I’ve done? I am not sure how we got through it, sitting in meeting after meeting fighting for answers and the help we needed…”

But there was one day and one meeting where things changed. A Roald Dahl Nurse called Teresa was sitting alongside the consultant at a hospital appointment, Holly remembers. “It felt like things changed then. In that moment. She just had a different approach. She was advocating for Maisie. Asking questions I wanted to ask, or picking up on something I’d said or asked and making sure it was given attention. She worked relentlessly to get the genetic results so we could better understand what was going on. It was from that day, that first meeting, that it suddenly felt like we had a friend who was fighting in our corner, Maisie’s corner. And from that day that’s been the case. Teresa’s been there every single step of the way.”

Teresa is a Roald Dahl Nurse – one of over 150 specialist senior nurses caring for over 36,000 children in NHS Trusts across the UK. She has been established in post thanks to donations to Roald Dahl’s Marvellous Children’s Charity. Teresa and other Roald Dahl Nurses provide a bespoke, holistic, ‘make things happen’ kind of care for children and families living with some of the most serious and complex lifelong health conditions. And every year some Roald Dahl Nurses and the children they support are invited to lunch at Clarence House in the run up to Christmas, with the charity’s Royal Patron Her Majesty The Queen, the children helping decorate the royal Christmas Tree.

“I can’t think of two people more deserving of this visit than Teresa and Maisie,” says Holly. “Maisie’s life - our family life - is different because of Teresa,” says Holly. “She is so hard working, so caring, and so genuine. Before we had her we felt lost, and we don’t anymore. Now I can call her and say, ‘Maisie is doing something weird’ and she’ll ask me to send a video and give me a call. Or when Maisie is admitted to hospital – as she was last week when she was having epileptic seizures – I call her and she appears, looking for us, asking if I’m alright, joining in meetings with doctors, inviting me to have a chat over a cup of tea. You are seeing so many doctors each time and they don’t know Maisie, so you want to have an expert in the room who knows her, who cares so much for her. Teresa knows her history, and will fight for what is best for Maisie, gently questioning a decision, or giving us confidence if she agrees with it. Explaining everything to us. That makes a difference that is hard to describe. I don’t know if those who donate to this charity can possibly understand how transformational their support is. We’re not talking once in a while. This matters and makes a difference to us on a daily basis.” Parents who benefit from Roald Dahl Nurses do say this over and over. And that there is something about having someone on the medical journey with you, that enriches the rest of life, too. Not only via the services and support the charity can signpost and facilitate (be it emotional support or help accessing benefits) but that confidence from the care allowing them to enjoy the moments in between the medical emergencies. If you’d like to find out more about how you can support Roald Dahl’s Marvellous Children’s Charity visit https://www.roalddahlcharity.org/christmas.