Brave little Sadie Simons doesn’t like going to London as a result of it normally means she might be in hospital, typically for weeks.
But two days in the past, one thing magical occurred as Sadie, 9, and her household got here to city to not see a physician however to have lunch with Her Majesty the Queen.
They had been among the many households supported by Roald Dahl’s Marvellous Children’s Charity invited to assist beautify the Royal Christmas Tree at Clarence House.
Sadie was trembling with pleasure as she curtseyed earlier than Camilla and handed her a bouquet of flowers.
The Queen thanked her for them earlier than taking her by the hand to main her and different kids on the occasion to embellish the tree.
Sadie, who lives in Puckeridge, Herts, stated: “I was so excited. The Queen was very nice. I gave her flowers and she liked them.
“She helped me select the primary ornament to placed on the tree and she or he introduced 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 ready to be readmitted to Great Ormond Street Hospital for one more in a sequence of operations as she battles an irreversible intestinal situation.
Her mom Lucy, 37, and her Roald Dahl Nurse Grace Mardle, 33, who helps take care of her and her household had been along with her on the lunch.
Lucy stated: “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 had been so happy with her and it was such a thrill to share it along 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 got here into our lives we had been simply holding it collectively.
“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
kids’s emergency and youngsters’s cardiac care.
She was established in put up as a Roald Dahl Nurse at Lister Hospital a 12 months in the past, because of donations to Roald Dahl’s Marvellous Children’s Charity.
Lucy provides: “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 12 months the Daily Express Christmas Appeal is in assist of the work carried out to offer 150 Roald Dahl nurses who take care of greater than 36,000 kids throughout the UK.
Roald Dahl Nurse Grace Mardle says the charity is supporting a “fully completely different” means of caring for kids and their households.
I’ve the possibility to get to know every of the youngsters and every household, like Sadie and Lucy, and what their wants are.
Children who’ve medical complexity like Sadie have so many various docs and specialists they must see. If Sadie’s poorly and one thing goes incorrect, it impacts every part else and includes all of the specialists making modifications to her care or drugs.
When that occurs it is large and might contain hours of creating and attending appointments and listening to and taking up board all the recommendation that comes out of them.
I take away a few of that massive burden from Lucy. I can converse to the specialists, co-ordinate appointments, type out new medicines and I’m there if Lucy has any questions or considerations.
It’s lower than her to seek out the proper physician and attempt to get by way of every time she has a query. She can simply name me.
It’s about Sadie, too. Simply decreasing the variety of journeys to hospital by managing the care at house, or being that individual she is aware of and trusts and who can liaise with docs when she is admitted. And once they’re out of hospital I can work with the college, in order that they correctly perceive her altering wants when she’s again in school.
Sadie is like some other nine-year-old, desirous to do nine-year-old issues. But she is having to handle life with all this complexity and uncertainty of what is going to occur subsequent week, or subsequent month. In this position I’ve the possibility to be alongside her and her household on this journey. I like that I’ve that chance.
I used to be so excited to go to Clarence House with them each. It was so good to see how the expertise made Sadie really feel so particular, as a result of she is so particular.”
https://www.express.co.uk/news/uk/1988635/daily-express-christmas-appeal-queen-camilla-serves-lunch