‘They make it so special’: Christmas at GOSH for Rowan’s family

Rowan first came to GOSH when he was two years old and was seen by the hospital’s immunology team.

“They knew he had an immune deficiency, but they couldn’t put their finger on what it was, so it was an ongoing investigation,” Jo says.

A few years later, Rowan's little brother, Karson, was born. Like Rowan, Karson wasn’t well as a baby and was soon referred to the same team at GOSH.

Karson had a range of tests and was diagnosed with a rare genetic disorder called IPEX syndrome when he was six months old. Shortly after, Rowan was diagnosed with the same condition.

Karson very sadly died when he was nine months old, shortly after a bone marrow transplant.

“Rowan still talks to him, and we also have a little book where we can write to Karson if we don’t want to say it out loud,” Jo says.

“It’s Karson’s birthday on 15 April, and Rowan wants to get him some balloons, so I’m going to get him some balloons and a cake. We usually sing him Happy Birthday.”

Shortly after Karson's funeral, Rowan became unwell and the family had to return to GOSH.

“I had to come back into the building next door to where Karson had been,” Jo says. “They knew we didn’t want to be there because of losing Karson, so they said, ‘We’re going to hurry up and get to the bottom of it to see what’s wrong with Rowan.’”

Rowan was diagnosed with nephrotic syndrome, a condition affecting the kidneys. He had a bone marrow transplant at GOSH in 2022, when he was seven.

“At first, I didn’t want him to go ahead with it. But then I thought, ‘this is Rowan’s future,’ so I said, ‘okay, let’s do it. Let's get him in,’” Jo says.

“His cells came from Germany, so it was an unrelated donor. It was very emotional, but Rowan did really well. He stayed in GOSH for 28 days."

While Rowan’s transplant went well, he later had to return to GOSH due to pressure on his brain.

Rowan then developed graft-versus-host disease (GvHD), which is where the immune cells of the donor attack new cells.

Later, doctors also found that Rowan had BK virus, which was impacting his kidneys.

“Our bodies all have BK virus, but because our bodies have immune systems, we can fight it off. Rowan doesn’t have an immune system, so it attacked his kidneys and damaged them,” Jo says.

“In January 2024, Rowan became very poorly and went into hospital. There was fluid in his lungs which showed that his kidney function was really not good, and he needed to start dialysis.”

Rowan now has dialysis at GOSH three times a week.

Because of his condition, Rowan has spent the past three years in isolation, which has put a lot of strain on his childhood.

“Sometimes, he gets upset that he can’t go out with his friends. He has no immune system, so he can’t go to school,” Jo says.

When Rowan stays at GOSH, he receives support from the Play team and the GOSH School.

"Someone from the Play team visits him every day, and he has an hour of teaching from GOSH teacher Katie. Once a week, a GOSH PE teacher visits him in his room and gets him to do all sorts of things, including playing basketball whilst still attached to his dialysis machine.”

Rowan also manages to make the hospital feel like home during longer stays.

“We take his own Xbox and his own telly, and we set it out so that he’s got his own game station. He loves it,” Jo says. “He calls his friends and cousins when he plays.”

The first time Rowan spent Christmas at GOSH, Karson was in hospital.

“It was Karson’s first Christmas before he sadly passed away, and it was our first ever Christmas together as a family,” Jo says.

Rowan and his dad stayed in family accommodation and headed to the ward to meet Jo and Karson on Christmas morning. “Santa had come, and they both opened up their presents together,” Jo says.

After Karson passed away, Rowan went on to spend more Christmases at GOSH – this time as a patient. Each year, the staff go out of their way to make sure it’s fun.

“They make it so special,” Jo says. "It’s hard to be in there because of the situation, but they bring so much joy and excitement to the children.

“GOSH always brings Father Christmas and his elves around. The kids love him. The atmosphere means you don’t feel like you’re in the hospital; you still have laughs and jokes and smiles.

“On Christmas morning, the nurses come in, and everyone is really excited.

“You can go down to have your Christmas dinner in the Lagoon, or you can bring it up to your room.”

Jo recalls one Christmas Eve when Rowan couldn't sleep because he was so excited.

"I gave him a bath and put him in his new pajamas. He said, ‘I’m going to wait to see if I can see Santa.’

“He thought he could actually spot Santa out the window. The nurses were going, ‘Come on, Rowan, you need to go to sleep,’ because they wait until the children are asleep before bringing in their stockings.

“Then at 3am, he woke me up saying ‘Mum, Mum, look, Santa’s been!’”

By donating to GOSH Charity this Christmas, you’ll help to bring joy to the wards and create magical memories like Christmas parties, crafting and Santa visits, as you’ll help to fund vital services like free home-from-home accommodation to keep loved ones close at Christmastime and all year round.

Your donation will also help us find new treatments and cures for the rarest and most complex childhood illnesses. And that means more children can look forward to many more Christmases to come.