'I'm just happy I'm not in hospital this Christmas'

For the last few years, 10-year-old Tillie has spent the run-up to Christmas either in hospital being treated for kidney disease or recovering at home after undergoing a transplant, receiving a kidney donated by her dad.

While Tillie, from Colburn in North Yorkshire, has missed out on many of the things children her age enjoy during the festive season, this year finally sees her much healthier, looking forward to Christmas with her family and just feeling "happy I'm not in hospital".

Tillie's mum, Marie Wood, says it has certainly not been an easy journey for her little girl to reach this point: "The road to recovery has not been straightforward."

Tillie was diagnosed with a rare genetic disorder shortly before her seventh birthday.

Nephronophthisis-4 (NPHP-4) is an incurable kidney condition that causes cysts, affects the function of the organ and may eventually lead to kidney failure.

According to the charity Kidney Care UK, the condition is thought to affect about one in 75,000 people in the UK and is usually first diagnosed in babies and young children.

A kidney transplant is part of the treatment, and Tillie will require further transplants during her life.

It was just over two years ago, on 30 November 2023, when Tillie was ready to receive a kidney from her dad, Martin Wood, at the Royal Victoria Infirmary in Newcastle. At that point, her kidney function had dropped to about 8%.

On the day of Tillie's operation, her dad had his kidney removed at the nearby Freeman Hospital in Newcastle. Meanwhile, Tillie was waiting to receive it on what Marie said "was the longest day of my life".

"Tillie was taken down to surgery at 10am," Marie remembers.

"She was supposed to be in recovery by teatime, but due to complications I finally got to see her in intensive care at 10pm."

Tillie had further complications in the weeks after her transplant and was discharged late on Christmas Eve, with her new kidney which she had affectionately named Rosie.

Martin said it was an "honour" to be able to donate a kidney to his "baby girl in her hour of need".

"It's just what you do, isn't it, as a parent?"

Tillie says she is just thankful for the sacrifice made by her dad: "It feels really special to have dad's kidney because I won't have to go on dialysis."

Martin says he and the family are "so proud" of Tillie after the "awful situation" she found herself in.

"I make no bones about it, my role in our journey was a minor one," he says.

"The true heroes are the doctors and medical teams, the surgeons that perform life-saving miracles, and the after care of these hugely talented professionals, and our amazing family and friends, without whom we wouldn't have managed."

While Tillie had her "fair share" of infections in the months following her operation, Marie says her daughter was still determined to join the Newcastle Children's Transplant Team for the British Transplant Games in Nottingham in August 2024.

In fact, Tillie took part in several events, including long jump, the obstacle race, ball throw and tug-o-war, coming home to North Yorkshire with six medals including gold for the 50m sprint in her age group.

This November, Tillie was invited to switch on the Christmas lights in her nearby town of Richmond, just a couple of days before what the family calls her two year "kidneyversary".

The family has also been able to enjoy the Polar Express train ride on the Wensleydale Railway this year, and Tillie is able to watch her cousin in a Christmas theatre production, which she missed last year because she was too poorly.

"I am happy I am not in hospital and I am really looking forward to spending time with my family this Christmas," Tillie says.

Tillie's sister, Chloe, 14, played a large part in looking after her dad after his operation, as well as travelling to visit Tillie in hospital after school.

Chloe says: "Tillie has gone through a lot and I'm really proud of her that she's doing well now and she's got through it.

"This Christmas, it feels like things are more laid-back. It feels a bit more normal."

Martin says Chloe has been a "superstar of a big sister" throughout the process, never missing a day of school and stepping up with hugs and reassuring cuddles when Tillie was feeling down.

"We're all super-proud of how she coped with all the stressful times too, while not seeking any attention for herself in Tillie's hardest of times," he says.

Martin says everyone knows that Tillie now faces an "uphill struggle" to keep the donated kidney "happy and healthy" for as long as possible.

"Some day in the future, that kidney - my kidney, that left my body healthy and fully functioning - will fail again in Tillie's body, leaving her in need of yet another kidney," he says.

In the meantime, Martin says the pride he has over being able to help Tillie with her first transplant comes with the conflict of knowing that next time around there is nothing he can do to help her.

But two years on from her transplant, Martin says Tillie's family can see that "finally the better times are coming", with hospital visits becoming far less frequent and most dietary restrictions lifted.

"We're looking forward to a lovely stress-free Christmas at home together, spending quality time with family, friends and our pets, instead of doctors and nurses," he smiles.

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