Kidney swap for GOSH patient who’s spent over 3,600 hours on dialysis

Destiny-Rae has been on dialysis since she was ten months old after being diagnosed with a rare condition, which caused kidney failure among other complications.

Whilst on dialysis, she visited Great Ormond Street Hospital (GOSH) at least three times a week and spent over 3,600 hours on the dialysis machines, which helped to clean her blood as her kidneys couldn’t.

When she was four years old, she was big enough and well enough to join the waiting list for a kidney transplant from a deceased donor, but as the wait continued her mum Maria started to look for more options.

Maria met Liffy who was willing to donate one of her healthy kidneys after speaking about Destiny-Rae's story on social media app Clubhouse to try and raise awareness.

Liffy, who is a mum herself, wanted to do whatever she could to help but unfortunately wasn’t a match to be able to give Destiny-Rae one of her kidneys directly.

The duo instead joined the UK Living Kidney Sharing Scheme. The scheme matches donors to those in need of a transplant in a paired or pooled swap. For example, Liffy wasn’t a match for Destiny-Rae but was willing to donate one of her kidneys as part of a swap to ensure Destiny-Rae was able to receive a kidney that was a match for her, and so NHS Blood and Transplant’s scheme looked for a recipient and donor in the same situation who might be a match.

Speaking about her decision to join the scheme, Liffy said: “It means the world to me to be able to help. I’ve got a daughter who is exactly the same age, and I can’t imagine being in the same situation.

“If you can do it, I don’t know why you wouldn’t - it can literally save a life and give a better quality of life. There’ll be no real change for me, but it’ll be lifesaving for someone.”

The UK Living Kidney Sharing Scheme, run by NHS Blood and Transplant, does quarterly matching runs to identify potential transplants based on blood group and tissue type matches.

Destiny-Rae and Liffy had already been through two unsuccessful runs, but at the beginning of this year were told they’d been matched with another pair. The BBC followed them in their third attempt on the scheme in a bid to help raise awareness of the sharing scheme.

Mum Maria said: “I literally couldn’t believe we got a match. I feel so grateful to everyone who has helped us on this journey.

“We wanted to share our story with the world so people can become inspired to consider organ donation. In certain communities, including my own, organ donation is not common, but I want to show the role you can play in changing someone else’s life for the better.”

Destiny-Rae learned about how a new kidney would help her as part of her learning with GOSH’s Play team. She worked through her New Kidney Book with her Play Specialist Charlotte.

When asked what she would most look forward to after her kidney transplant, Destiny-Rae says ‘eating more vegetables’, ‘swimming and ‘gymnastics’ - these are all things she has not been able to do as she was on a very strict diet and cautious of her haemodialysis line.

Mum Maria says: “I can’t even put into words what a difference this will make. We used to go to hospital three to four times a week, it took away part of her childhood as there is so much more she could be doing.

“To receive a kidney is mind-blowing. It’s absolutely remarkable that Liffy and the donor from the scheme were willing to help Destiny-Rae.”

Following a successful transplant, Destiny-Rae is now recovering at home and looking forward to going to school full-time, without having to miss lessons for dialysis. The family will still regularly visit GOSH, but are looking forward to all the things they can now do as they’re dialysis-free, including visiting family, going on holiday and starting some new hobbies.

Maria Scanes, a transplant co-ordinator at GOSH said: “We’ve had the pleasure of caring for Destiny-Rae for many years, but we very much want her to be living her best childhood, going to school, enjoying new hobbies and being able to eat and drink without worrying.

"It’s so important that we do everything we can to find matches for children who need a transplant, and we can’t thank the donors enough for the incredible gift – it’s not just an organ, it’s a childhood and a future.”

There are 249 children waiting for an organ transplant in the UK, and 121 of them are waiting for a kidney transplant.

NHS Blood and Transplant runs many different schemes to encourage organ donation, including the UK Living Kidney Sharing Scheme. Living transplants are often more successful than deceased donor transplants because the kidney is transplanted soon after removal, meaning the blood and oxygen supply is quickly restored.

Lisa Burnapp, Associate Medical Director for Living Donation at NHS Blood and Transplant, said: "Living donation is highly successful, and more than 1,000 people have had their lives saved and transformed thanks to the generosity of these donors. However, there remains a national shortage of organs, particularly from black and ethnic minority donors. As the number of people waiting for kidneys continuing to rise, the chances of finding a suitable donor are higher when a potential donor is of the same ethnicity as the organs need to be a suitable blood group and tissue type to avoid rejection by the body.

“Please register your donation decision on the NHS Organ Donor Register and speak with your family today.”

Visit NHS Organ Donation to learn more.