‘She was scooting around the ward!’: Meet Aditi

Aditi was born 10 weeks early, weighing just 850g. “She was all good, but she was very tiny,” Uday says.

But, other than a problem with her cornea – the clear outer layer at the front of the eye – she initially had no major health problems.

“She went to nursery, then school later, and everything was fine, but she was the tiniest in the whole school,” Uday says.

Things changed around the time of her fifth birthday in April 2020, when her eyes and tummy became swollen and puffy.

When Uday and Divya took her to A&E, they were told she was showing signs of nephrotic syndrome – a condition where the kidneys drain away their proteins, causing fluid retention in the body.

“This was quite a bit to take in, because things had been going great since her birth,” Uday says.

“We thought this was just a small hurdle, get it done with, sorted. But the moment the doctors mentioned it’s the kidney, obviously it felt different, as a parent that’s the last thing you want to hear.

“When you looked at her, although she looked tiny, you couldn’t see anything wrong. She was a bit puffy, but she would run around and sing songs. But then in the background there was something that was much more difficult to explain.”

After three days at their local hospital, Aditi was transferred to GOSH. Here she was treated with a range of steroids, which caused some side effects.

“The main side effect was she could be irritable,” Uday says. “She could even have an emotional upheaval. Instead of asking ‘Could I have that please’, she would just cry out or shout out, just look at the stuff and expect us to understand what she wants.”

Aditi stayed at GOSH for three months as an inpatient. Despite the difficult circumstances, Uday found the hospital had a positive, child-friendly feel to it.

“When you walk into any hospital you get this feeling – everything is negative. When you walk into GOSH it doesn’t feel like that, it is more like a play club, or nursery, you rarely see children crying or in pain.

“Children are there, you see them happy, a smile on every child’s face, they are always running around, and it comes down to how the hospital has provided for children and families. It’s a different place altogether.”

At this point in her childhood, Aditi loved singing – especially songs from The Sound of Music and Disney films – and would often want to sing following appointments.

“The nurses would say ‘Oh there she goes again!’” Uday says.

When Aditi was discharged, she continued the steroid treatment at home and visited the hospital for check-ups. She slowly started returning to school, but – just two months later – the family learned that the steroids weren’t working, and they were slowly withdrawn.

“There are some conditions that steroids are resistant to, and we happened to be one of those. So, in November some of the meds were taken away, she had to be slowly weaned off them.”

Around this time, Aditi was also diagnosed with a rare genetic disorder called Schimke immuno-osseous dysplasia. The condition is associated with many of the symptoms that she has displayed, including short stature and kidney failure, but it also causes immunodeficiency.

“That was a major shock because it's quite rare, the number that have been treated around the world is negligible,” Uday says. Aditi was referred to the Zayed Centre for Research, which is a partnership between GOSH, University College London and GOSH Charity.

In January the following year, Aditi unfortunately relapsed and she was readmitted to GOSH.

By the spring, Uday and Divya learned that her kidneys were rapidly failing – she needed to start dialysis, which does the job that is normally carried out by the kidneys. “I remember the conversation we had with the doctors. That was one hell of a bad day,” Uday says.

“If it was straightforward, the remedy would have been a kidney transplant,” he adds. “But her immunity need[ed] to be sorted out first.” In September 2022 Aditi had a bone marrow transplant, and she returned home just before Christmas.

Aditi would visit GOSH three days a week for dialysis and it became a huge part of her life. “Eagle ward was like home,” Uday says.

For Uday, one of the main highlights during this period was the hospital’s Play team, funded by GOSH Charity, who spent time with Aditi.

“They provided a musician, or art class or singing or any activity on Zoom. In the week we would have at least four occasions where we are with them, they are more like an extension of the family now,” Uday explains.

“She loved to do colouring or Lego or Playdoh, she would be happy with anything – storytelling, singing, lots of activities.”

The main respite for Uday and Divya as parents was the hospital school.

“They looked after her studies,” Uday says. “There was a teacher attached to her. They would come over around 1-1.30pm on Monday, Wednesday and Friday and run classes for her. That was a good support for her.”

Aditi’s kidney transplant went ahead in February 2023, with her mum as the donor. It was the UK’s first ever kidney transplant without the need for lifelong immunosuppressants.

“All went to plan,” Uday says. “Mum went home three days later, and Aditi and I stayed at GOSH for four weeks.

“She was up and about after about a week, but because it hurt to walk, she asked for her scooter and was scooting around the ward!”

By June 2023, Aditi had returned to school and enjoyed settling back into her class.

“We were a bit worried that she would feel out of place,” Uday says. “But the class has been briefed about her operation, and they are great – they come to meet her at the gate when she arrived.”

Today Aditi is doing well and has settled back into life at home.

The family continue to visit GOSH, and enjoy catching up with members of staff they’ve come to know well.

“We’re there nearly two hours each time meeting with doctors and things. It’s something we look forward to, seeing the nurses who took care of her and went on this journey with us.”

This year, Aditi will turn 10 and is already eager to hear what her parents have in store to celebrate.

“She says to us ‘don’t forget January is over soon, what do you have planned for my birthday?’ Uday says.

“She’s so excited to celebrate it this April. It’s so special to see her reaching this milestone.”

Aditi’s family also celebrate their “star” birthday.

“We follow two types of calendar: one is the one everyone follows, and we have another which is very local to us, it follows the same dates but it is guided by stars and other astronomical combinations,” Uday says.

"So we have her birthday in April, but the star birthday can be earlier or later.

“So it’s a busy month for birthdays - two birthdays [Aditi’s and her brother's], plus two star birthdays for the kids. There will be a lot of running around and having loads of fun.”

At GOSH Charity, we stop at nothing to help give seriously ill children like Aditi the best chance and the best childhood possible.

Find out more about how we support children and their families at GOSH, and discover how you can get involved.