Girl, 12, whose body swelled by 10kg makes comic book for hospital which saved her life after dad’s kidney donation

A 12-year-old girl whose body swelled so much she gained 10kg has produced a comic book to thank the hospital which saved her life after a kidney donation from her father.

Naia Clarke, from Woking, Surrey, experienced extreme swelling in 2022 – starting with her eyes and then her ankles, before her whole body swelled and her weight increased by a third due to retained fluid.

She was diagnosed with nephrotic syndrome, a rare condition which causes the kidneys to leak large amounts of protein into the urine, in September 2022, and her kidney function dropped from 30% to 9%.

After starting dialysis – a procedure to remove waste products and excess fluid from the blood – in January 2023, discussions around a kidney transplant took place.

It was discovered both parents were a match for Naia and her 47-year-old father Adrian, an IT director and a comic book editor, donated one of his kidneys to his daughter, with the transplant taking place in November 2023.

Although Naia must take medication for the rest of her life and may need another kidney transplant in future, her mother Stacey, a headteacher at an infant school, said her daughter’s transformation has been “incredible”.

To give back, Naia and Adrian have since created a comic book, dedicated to the team at Evelina London, featuring stories of robot private investigators and a first-person account of Naia’s diagnosis and experience in hospital, with all profits going to the hospital’s charity.

Speaking about the kidney transplant, 40-year-old Stacey told PA Real Life: “At the time, you don’t realise what a monumental gift it is but now, a year on, her appearance, her zest for life, her energy levels – everything that we’d seen diminish – have come back.

“We just want to get the message out there that, being a living organ donor, you can still live your life and give the gift of life to someone else.”

Adrian said: “None of it crossed my mind as not being an option – she had to have this and being able to help her is brilliant.

“With the comic book – I’ve always loved comics, they help children to read and understand the world around them, so I thought I should use my skills and pay them forward.”

Stacey and Adrian described their eldest daughter Naia as a “lively, outgoing, sporty young girl” who loves swimming.

She had been seemingly “healthy and fit” up until her parents noticed swelling around her eyes in March 2022 – but given Adrian suffers with hay fever, the family assumed Naia was experiencing similar symptoms to her father.

On September 12, however, Naia’s whole body had started to swell, to the point where she had gained 10kg – a third of her body weight – in fluid and she needed urgent medical attention.

“Her ankles had swollen probably triple the size of what they should have been, so Adrian took her to our local GP and they referred us straight to Royal Surrey County Hospital,” Stacey said.

“She had started to retain fluid in most of her body – her face was swollen, her eyes were swollen, her limbs were swollen, her back and, at one point, she had fluid going up into the lungs.

“It overtook her body.”

Within a matter of days, Naia was diagnosed with nephrotic syndrome but the severity was unknown at this stage.

Stacey and Adrian, who have a younger daughter called Elenie, now six, said they had never heard of the condition and the diagnosis “turned (their) world upside down”.

“It was a terrible, unknown situation and, actually, I think it’s your worst nightmare as a parent,” Stacey explained.

“You feel absolutely out of control and helpless… and your whole family life absolutely dissolves in front of you.”

Naia was prescribed steroids and had infusions, but since she was “not responding and just worsening”, she was transferred for specialist care at Evelina London Children’s Hospital on her 10th birthday on October 25.

The results from further tests and a biopsy revealed Naia’s kidney function was at 30% at this stage and doctors said that, eventually, she would need to start dialysis.

However, within weeks, Naia went into end stage kidney failure and her kidney function dropped to 9% just before Christmas 2022.

“It just snowballed,” Stacey said.

“In terms of her function, she was lethargic – she wasn’t our little girl over Christmas.

“You knew you needed to move quickly and you knew something needed to happen because, ultimately, her body wasn’t going to keep going much longer.”

In January 2023, Naia started peritoneal dialysis – which involves pumping dialysis fluid into the space inside your abdomen to draw out waste products from the blood – at home.

Both Stacey and Adrian underwent training for this and, from January to November, Naia had dialysis between 12 and 14 hours every night, seven days a week.

Doctors started discussing the option of a kidney transplant during this time and, after tests and examinations, it was discovered both parents were a match, leaving them “speechless”.

Although a transplant was not a cure, the couple knew it would give Naia “more flexibility with life”, and Adrian therefore decided to donate his kidney to his daughter.

“I didn’t really think about it, it just made sense,” Adrian said.

“I knew this is what I needed to do for her.”

On November 8 2023, Adrian underwent surgery at Guy’s Hospital to remove his right kidney and Naia had the transplant at Evelina London later that day.

Stacey said seeing her daughter “so helpless” after the surgery was heartbreaking – but the procedure has been life-changing.

“On the transplant day, I had two of my most loved people on the table at the same time and that’s something that you never want to even think about,” Stacey said.

“But there were check-ins and updates constantly – Evelina London has an incredible team.”

The transplant was a success and, one year later, having celebrated her first “kidney-versary”, Naia is thriving and has since joined a competitive swimming club.

As a way to give back, Naia and Adrian have created a comic book, dedicated to Evelina London, to raise awareness of the hospital’s life-saving care.

The all-ages comic issue, edited by Naia, features imaginative stories about detectives and a robot city – and Naia has even authored a piece about her care at the hospital.

All profits from the comic, which will be the first children’s comic in the SHIFT series, will go to Evelina London Children’s Charity, and the family hope others will consider becoming a living organ donor.

Stacey said: “I don’t think you ever realise, as a parent, just how much your child changes in terms of their demeanour, energy levels, and what they’re going through.

“It’s not until afterwards, when they actually have a healthy organ again and it’s functioning beautifully, that suddenly you think, ‘Wow, here she is. She’s back’.”

The comic book is available from December 20 in retailers across the UK and Ireland, including WHSmith and independent comic book retailers. To find out more, visit: theshift.store/shift-it.

To support or donate to Evelina London Children’s Charity, visit: evelinacharity.org.uk.