Courageous little Sadie Simons doesn’t like going to London as a result of it often means she will probably be in hospital, typically for weeks.

However two days in the past, one thing magical occurred as Sadie, 9, and her household got here to city to not see a health care provider however to have lunch with Her Majesty the Queen.

They have been among the many households supported by Roald Dahl’s Marvellous Youngsters’s Charity invited to assist enhance the Royal Christmas Tree at Clarence Home.

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 youngsters on the occasion to embellish the tree.

Sadie, who lives in Puckeridge, Herts, stated: “I used to be so excited. The Queen was very good. I gave her flowers and he or she preferred them.

“She helped me select the primary ornament to placed on the tree and he or she introduced sausage and mash for me to eat and poured on the gravy.

“It was such good enjoyable. Santa was there however he was very naughty. He saved stealing the sweets, we noticed him do it!”

Sadie is ready to be readmitted to Nice Ormond Road Hospital for one more in a collection of operations as she battles an irreversible intestinal situation.

Her mom Lucy, 37, and her Roald Dahl Nurse Grace Mardle, 33, who helps look after her and her household have been together with her on the lunch.

Lucy stated: “It was completely superb. The Queen was so beautiful with the youngsters, she even served them their lunch which was fantastic. She simply took them by the hand and had a very good chat with them, actually it fully made our day and Sadie had a unbelievable time.”

Grace added: “It was so emotional watching Sadie with the Queen, we have been so pleased with her and it was such a thrill to share it together with her.

“Despite her situation Sadie has an actual love of life and he or she relished each second of her time there.”

The occasion is hosted yearly by The Queen for kids supported by Roald Dahl’s Marvellous Youngsters’s Charity and the hospice supplier Helen and Douglas Home as Camilla is Patron of each organisations.

Sadie can eat solely the smallest quantities of meals within the regular means within the day, together with when she’s at college.

She additionally lives with a Hickman line, a tube going into her chest and a vein close to her coronary heart – which is important to ship liquid meals to verify she will get the goodness she wants.

Lucy stated: “Till Grace got here into our lives we have been simply holding it collectively.

“Sadie usually appears to be like like there may be nothing incorrect together with her in any respect. She is an attractive,

bubbly woman dwelling life to the max. And I’m simply so joyful to be together with her and pleased with her. That’s what individuals see.

“However what they don’t see are the occasions when she is absolutely poorly or in ache. How we reside on a knife edge. Even a raised temperature means we’re in hospital for 48 hours as a result of she has a line going into her coronary heart.

“Individuals can’t perceive the enormity of getting a significantly unwell little one – our storage stuffed with medical gear, the fridge full of medicines, the 24/7 care – or what life is like for her.

” There aren’t any sleepovers in Sadie’s life or after faculty golf equipment or actions. Generally hospital is so traumatic for her she merely stops talking.

“This life can go away mother and father like me feeling overwhelmed and remoted, like we’re

mum but additionally nurse and advocate and counsellor, with nobody we are able to lean on in

flip. With only a sense we’ve got to be sturdy for this little one we love.”

Grace, who lives in Hertfordshire, has been nursing for over 10 years, working in

youngsters’s emergency and kids’s cardiac care.

She was established in submit as a Roald Dahl Nurse at Lister Hospital a 12 months in the past, due to donations to Roald Dahl’s Marvellous Youngsters’s Charity.

Lucy provides: “Sadie has autism and doesn’t simply click on with individuals, however she cherished

Grace from the primary.

“And Grace has acquired to know and perceive her and her very advanced wants and expertise of them in a means that has modified our lives.

“It’s about having her in hospital appointments and taking up all that comes out of them. She’ll say, ‘let me converse to Nice Ormond Road, Lucy’ or ‘Let me discover out about that treatment for you Lucy’ – taking jobs off me that used to take perpetually, and co-ordinating all of the care after we arrive at hospital.

She’s solely a name away when I’m nervous about one thing, and listens – actually listens – to what I’m saying or how I’m feeling after which goes to seek out the solutions or help we’d like.

“Just lately, after we rushed into hospital, Sadie in horrible ache saying there was a

drawback together with her IV Line, we sensed that medical doctors who have been on obligation couldn’t see how

large the issue was. Then Grace seems and says: I do know this little one. She by no means

complains. There should be one thing with the road…”

“Each time, and I might provide you with so many examples, I’m so grateful and so

relieved to have her there.

“Having Grace in our life has decreased these dashes into hospital for certain. Additionally we are able to reside our lives, as an alternative of worrying about what’s subsequent for Sadie and the way we’ll cope.

“It’s permitting me to cherish each day with Sadie and serving to her brother Riley share in that in a constructive means. I don’t put something off.

“Sitting right down to a film with them, taking part in video games, dancing within the sitting room – which Sadie will do even when all wired up.

“And going to London was so thrilling. Simply the 2 of us having fun with an in a single day in a resort after which a visit to Clarence Home with Grace. We cherished each second, and we’ll treasure that perpetually.”

This 12 months the Each day Categorical Christmas Enchantment is in help of the work carried out to offer 150 Roald Dahl nurses who look after greater than 36,000 youngsters throughout the UK.

I’ve the possibility to get to know every of the youngsters and every household, like Sadie and Lucy, and what their wants are.

Youngsters who’ve medical complexity like Sadie have so many alternative medical doctors and specialists they should see. If Sadie’s poorly and one thing goes incorrect, it impacts every part else and includes all of the specialists making adjustments to her care or medicines.

When that occurs it is large and might contain hours of constructing 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, kind out new medicines and I’m there if Lucy has any questions or considerations.

It’s less than her to seek out the fitting physician and attempt to get by every time she has a query. She will be able to simply name me.

It’s about Sadie, too. Merely lowering the variety of journeys to hospital by managing the care at house, or being that particular person she is aware of and trusts and who can liaise with medical doctors when she is admitted. And after they’re out of hospital I can work with the varsity, so 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. However she is having to handle life with all this complexity and uncertainty of what is going to occur subsequent week, or subsequent month. On this function 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 Home 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.”