Brave little Sadie Simons does not like going to London because it usually means she will be in hospital, sometimes for weeks.
But two days ago, something magical happened as Sadie, nine, and her family came to town not to see a doctor but to have lunch with Her Majesty the Queen.
They were among the families supported by Roald Dahl’s Marvellous Children’s Charity invited to help decorate the Royal Christmas Tree at Clarence House.
Sadie was trembling with excitement as she curtseyed before Camilla and handed her a bouquet of flowers.
The Queen thanked her for them before taking her by the hand to leading her and other children at the event to decorate the tree.
Sadie, who lives in Puckeridge, Herts, said: “I was so excited. The Queen was very nice. I gave her flowers and she liked them.
“She helped me choose the first decoration to put on the tree and she brought sausage and mash for me to eat and poured on the gravy.
“It was such good fun. Santa was there but he was very naughty. He kept stealing the sweets, we saw him do it!”
Sadie is waiting to be readmitted to Great Ormond Street Hospital for another in a series of operations as she battles an irreversible intestinal condition.
Her mother Lucy, 37, and her Roald Dahl Nurse Grace Mardle, 33, who helps care for her and her family were with her at the lunch.
Lucy said: “It was absolutely amazing. The Queen was so lovely with the children, she even served them their lunch which was wonderful. She just took them by the hand and had a good chat with them, honestly it completely made our day and Sadie had a fantastic time.”
Grace added: “It was so emotional watching Sadie with the Queen, we were so proud of her and it was such a thrill to share it with her.
“In spite of her condition Sadie has a real love of life and she relished every second of her time there.”
The event is hosted every year by The Queen for children supported by Roald Dahl’s Marvellous Children’s Charity and the hospice provider Helen and Douglas House as Camilla is Patron of both organisations.
Sadie can eat only the smallest amounts of food in the normal way in the day, including when she’s at school.
She also lives with a Hickman line, a tube going into her chest and a vein near her heart – which is vital to deliver liquid food to make sure she gets the goodness she needs.
Lucy said: “Until Grace came into our lives we were just holding it together.
“Sadie often looks like there is nothing wrong with her at all. She is a beautiful,
bubbly girl living life to the max. And I am just so happy to be with her and proud of her. That’s what people see.
“But what they don’t see are the times when she is really poorly or in pain. How we live on a knife edge. Even a raised temperature means we’re in hospital for 48 hours because she has a line going into her heart.
“People can’t understand the enormity of having a seriously ill child – our garage full of medical equipment, the fridge full of medications, the 24/7 care – or what life is like for her.
” There are no sleepovers in Sadie’s life or after school clubs or activities. Sometimes hospital is so traumatic for her she simply stops speaking.
“This life can leave parents like me feeling overwhelmed and isolated, like we are
mum but also nurse and advocate and counsellor, with no one we can lean on in
turn. With just a sense we have to be strong for this child we love.”
Grace, who lives in Hertfordshire, has been nursing for over 10 years, working in
children’s emergency and children’s cardiac care.
She was established in post as a Roald Dahl Nurse at Lister Hospital a year ago, thanks to donations to Roald Dahl’s Marvellous Children’s Charity.
Lucy adds: “Sadie has autism and doesn’t easily click with people, but she loved
Grace from the first.
“And Grace has got to know and understand her and her very complex needs and experience of them in a way that has changed our lives.
“It is about having her in hospital appointments and taking on all that comes out of them. She’ll say, ‘let me speak to Great Ormond Street, Lucy’ or ‘Let me find out about that medication for you Lucy’ – taking jobs off me that used to take forever, and co-ordinating all the care when we arrive at hospital.
She’s only a call away when I am worried about something, and listens – really listens – to what I am saying or how I am feeling and then goes to find the answers or support we need.
“Recently, when we rushed into hospital, Sadie in terrible pain saying there was a
problem with her IV Line, we sensed that doctors who were on duty couldn’t see how
big the problem was. Then Grace appears and says: I know this child. She never
complains. There must be something with the line…”
“Every time, and I could give you so many examples, I am so grateful and so
relieved to have her there.
“Having Grace in our life has reduced those dashes into hospital for sure. Also we can live our lives, instead of worrying about what is next for Sadie and how we’ll cope.
“It is allowing me to cherish every day with Sadie and helping her brother Riley share in that in a positive way. I don’t put anything off.
“Sitting down to a movie with them, playing games, dancing in the sitting room – which Sadie will do even when all wired up.
“And going to London was so exciting. Just the two of us enjoying an overnight in a hotel and then a trip to Clarence House with Grace. We loved every second, and we’ll treasure that forever.”
This year the Daily Express Christmas Appeal is in support of the work done to provide 150 Roald Dahl nurses who care for more than 36,000 children across the UK.
Roald Dahl Nurse Grace Mardle says the charity is supporting a “completely different” way of caring for children and their families.
I have the chance to get to know each of the children and each family, like Sadie and Lucy, and what their needs are.
Children who have medical complexity like Sadie have so many different doctors and specialists they have to see. If Sadie’s poorly and something goes wrong, it affects everything else and involves all the specialists making changes to her care or medications.
When that happens it’s huge and can involve hours of making and attending appointments and hearing and taking on board all the advice that comes out of them.
I remove some of that huge burden from Lucy. I can speak to the specialists, co-ordinate appointments, sort out new medicines and I’m there if Lucy has any questions or concerns.
It’s not up to her to find the right doctor and try and get through each time she has a question. She can just call me.
It’s about Sadie, too. Simply reducing the number of trips to hospital by managing the care at home, or being that person she knows and trusts and who can liaise with doctors when she is admitted. And when they’re out of hospital I can work with the school, so they properly understand her changing needs when she’s back in class.
Sadie is like any other nine-year-old, wanting to do nine-year-old things. But she is having to manage life with all this complexity and uncertainty of what will happen next week, or next month. In this role I have the chance to be alongside her and her family on this journey. I love that I have that opportunity.
I was so excited to go to Clarence House with them both. It was so nice to see how the experience made Sadie feel so special, because she is so special.”
