Aditi's story
“Although she looked tiny, you couldn’t see anything wrong.”
Aditi is an outgoing ten-year-old who lives with her dad Uday, mum Divya and older brother Adithya in London.
When she was five, Aditi was diagnosed with a rare condition affecting her kidneys. Great Ormond Street Hospital (GOSH) has been a big part of her childhood.
“Aditi was born 10 weeks early,” says her dad, Uday. “She was very tiny, but other than a problem with her eye, she initially had no major health problems. She went to nursery, then school. Everything was fine, but she was the tiniest in the whole school.”
Things changed around the time of Aditi’s fifth birthday, in April 2020, when her eyes and tummy became swollen.
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,” 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.
“Although she looked tiny, you couldn’t see anything wrong. She was a bit puffy, but she would run around and sing songs.”
"When you walk into GOSH it doesn’t feel negative, it’s more like a play club."
After three days at their local hospital, Aditi was transferred to GOSH, where she was treated with a range of steroids.
“The main side effect was she could be irritable,” Uday says. “Instead of asking ‘Could I have that please’, she would just cry out or shout out, or just look at the stuff and expect us to understand.”
Aditi stayed at GOSH for three months. 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.
“Children are there, you see them happy, running around, and it comes down to how the hospital has provided for children and families.”
Another diagnosis
Aditi was discharged, continuing steroid treatment at home and visiting the hospital for check-ups. She gradually returned to school, but after two months later, doctors found the steroids weren’t working.
“There are some conditions that are resistant to steroids, and we happened to be one of those. So, in November some of the meds were taken away, she had to be 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 Aditi has experienced, 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 was readmitted to GOSH.
By the spring, Uday and Divya learned that her kidneys were rapidly failing. She needed to start dialysis, to take over the function of her 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.
GOSH’s Eagle Ward was ‘like home’
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... In the week we’d have at least four sessions with them, they’re more like an extension of the family now,” Uday explains.
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
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. “He 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 came to meet her at the gate when she arrived.”
Celebrating a star – Aditi today
Today Aditi is doing well and has settled back into life at home, and the family has been able to celebrate the milestone of her tenth birthday.
The family continue to visit GOSH, and enjoy catching up with members of staff they’ve come to know well.