Royal support at Rainbow Trust’s London Carol Concert fronted by West Sussex family

Princess Beatrice, accompanied by her husband Edoardo, read My Christmas Wish for You, at the magical candlelit evening, which raises vital funds for Rainbow Trust, which supports families caring for a seriously ill child.

The evening was hosted by journalist and TV presenter Mary Nightingale, one of the UK’s most well-respected newsreaders. Other special guest readers included radio presenter Jane Garvey, actress Alex Kingston and broadcaster, John Inverdale. Soprano Margaret Keys sang an array of festive carols including Oh Holy Night.

Guests enjoyed mulled wine, mince pies and heard a range of wonderful festive readings and performances from the Elstree School Chapel Choir who sang arrangements of classical Christmas songs and led the congregational singing of traditional Christmas Carols.

The Balestrini family from Crawley who are supported by Rainbow Trust, fronted the celebrity-studded event. William, 13, has undergone two kidney transplants and his nine-year-old sister Ellie read Chubby Little Snowman at the event. William’s brother Arthur, 11, and their parents Nancy and James also enjoyed the festivities.

Nancy said: “We had such a lovely evening and although Ellie had been a little nervous before, she thoroughly enjoyed reading. Rainbow Trust has made such a difference to us and Family Support Worker Janet has helped us cope better as a family.”

Rainbow Trust has nine care teams of Family Support Workers across England including London and the South East, who provide emotional and practical support for families caring for a seriously ill child at home, at hospital and in the community.

Zillah Bingley, chief executive of Rainbow Trust Children’s Charity, said: “Rainbow Trust’s annual carol concert is one of our most admired and popular events and this year was no exception. St Paul’s Church in Knightsbridge provided the perfect setting and it was wonderful to be able to host HRH Princess Beatrice and her husband Edoardo along with our celebrity patrons and supporters and of course the wonderful Elstree School Chapel Choir.

“Ellie read beautifully and it is always particularly special hearing from the families Rainbow Trust supports.

“Our heartfelt thanks go out to everyone for attending this event. Christmas can often be one of the hardest times of the year for the families we support. Everybody got into the festive spirit while fundraising for a fantastic cause, meaning Rainbow Trust Family Support Workers can help those families have the best Christmas possible.”

Rainbow Trust Family Support Worker Janet has been providing practical and emotional support to the Balestrini family for five years since William, who was born with kidney disease and low blood sugar, was eight years old.

The family self-referred to the charity after hearing about it from a friend whose son had kidney disease. They are so grateful to Janet that they want to help raise awareness.

“Janet has seen us at our very best and seen us have some really bad days,” Nancy said.

“Rainbow Trust is invaluable. She has made it so much better and helped us cope better as a family.”

Providing sibling support to Ellie and Arthur, particularly when William was undergoing his second transplant, by taking them on day trips and to their grandparents house and entertaining and distracting them so they felt included has made a great difference.

“It really helped Ellie and Arthur,” Nancy said. “I was so grateful Janet took them out. The focus is on William a lot so I did not want them to feel as though they had been forgotten about. Ellie loves seeing Janet. She’s there to talk to them and she takes them off and plays games with them so they don’t get bored.”

Janet has also helped William interact as he can find communication difficult at times and is being assessed for autism. He enjoys talking to her about his love of Manchester United and Pokémon.

“She’s quite happy listening to what he wants to talk about he likes talking to Janet.”

Nancy also enjoys her time with Janet.

“She’s great to talk to. It’s lovely for me to have another adult around.” Nancy said.

William underwent his first kidney transplant when he was two and a half when both kidneys were removed and replaced with one of his dad’s. The family stayed in hospital for 10 days and then moved to patient accommodation for a month.

Six months after the transplant William’s body rejected the kidney and although doctors reversed this, William then suffered the ordeal of another rejection.

“It wasn’t easy,” Nancy said. “It was very up and down.”

William survived on his dad’s kidney until he was 11 years old; but over the years he deteriorated until he was admitted to hospital every month for six months.

“We rarely went a few weeks without a hospital appointment,” his mum said.

When doctors decided he needed Haemodialysis at home, his parents attended a six-week training course at Great Ormand Street Hospital to learn how to manage the dialysis machine, which would take over the kidney function and get rid of excess fluid.

For two years, William was connected to the machine through a central line in his chest for four nights from 10pm until 7am. Nancy and James would set up and sterilise the equipment, which took 45 minutes.

“It was complex treatment. We had so much medical equipment, between 60 to 100 boxes every month,” Nancy said.

Fortunately, William’s sleep was not disturbed but the machine was extremely sensitive meaning his parents had many nights of broken sleep.

“The machine alarm would go off,” Nancy said. “It would stop. Every night was quite stressful. Some nights we got very little sleep.”

William underwent his second transplant, this time with his mother as the donor, on April 4 this year.

“He now has a kidney from both of us. This time round it was more tricky to manage because the children are older and I work as a Nurse Associate in the NHS.”

The transplant was almost cancelled after they discovered Nancy was anaemic.

“It was really stressful. There was a chance it wasn’t going to happen. It was right up to the wire and very tense.

Since Covid, the donor and recipient stay in different hospitals so Nancy was admitted to Guys and William to Great Ormand Street.

“That was difficult for me with William in a different hospital. I only had one hour to sit with him.”

During the operation and their recovery period Janet looked after Ellie and Arthur.

“They didn’t have much to distract them so to have that one-to one time was lovely for them.”

She would collect them from school and take them to Bocketts Farm and have fun with them.

William improved quickly and although his mother had lots of discomfort they were discharged after a week before moving into patient accommodation near the hospital for two and a half weeks as William needed regular blood tests.

The family are looking forward to a special holiday next year as they are not allowed abroad for 12 months after William’s operation.

“We are doing really well. I’m completely better. It’s hard thinking I don’t have an organ. William has really grown and he is happier. He’s the best he’s been. It has been a very long journey.”

They are so grateful that Janet has been part of that journey.

“Janet has such an involvement in our lives. We would have struggled without her. We were struggling before Rainbow Trust. When you have multiple children and a child who is chronically sick that’s unpredictable. Trying to juggle everything it’s made such a difference having Janet. It’s taken a lot of weight off, especially during the transplant.”

If you would like to support Rainbow Trust’s Christmas Appeal, please visit rainbowtrust.org.uk/christmas