How Leeds Children's Hospital surgeons changed life of kidney failure girl now training for British Transplant Games

Having been born with a condition called congenital nephrotic syndrome, she was essentially in kidney failure for the first almost three years of her life.

During that time she spent days on end in hospital, latterly hooked up to a dialysis machine for four to six hours up to four times a week, and even ended up in intensive care after catching the common cold.

That was until a donor kidney match was found, and on November 24 2014 surgeons at Leeds Children’s Hospital spent six hours on an operation which literally gave her the gift of life.

Now aged nine, she is among those set to take part in the Westfield Health British Transplant Games 2022, which was officially launched in Leeds yesterday – something proud mum

Sammi Ramsey, 31, could barely have dreamed of during those dark days.

“To look at her you wouldn’t realise what she has gone through,” she said. “Her life is completely different. There are just no words that describe it.”

Mia took part in the Games when she was younger and is looking forward to joining in the running and cycling events at next year’s event.

“It’s nice that every single person there is either a family member or person who has gone through similar or the same as her.

“There is bigger and bigger hype about it every year. It raises awareness of organ donation and how it can actually change someone’s life.

“It’s really special for all the kids who are part of Team Leeds that it’s [going to be] in their home town. It makes it that bit more special.”

Sammi, of Harrogate, said life completely transformed for Mia, and the family, after the transplant.

“You go from living in a hospital – and when you’re not in hospital, your child is so poorly you can’t even go out to the shops. She used to just lie on the sofa. She didn’t do anything, she didn’t talk, she didn’t walk, she didn’t crawl, she didn’t hit any milestone.

“She didn’t eat; she was tube-fed. She was just a breathing body, doing nothing.”

But she said after the transplant, the change was “immediate”.

“She literally looked like a different child – completely different. She looked like someone else. She was a healthy colour. Her skin was grey and see-through when she was poorly.

“In ICU, the morning after her operation, she was shouting for Hula Hoops – she hadn’t eaten in months and months before that.”

And once her 12-week post-transplant isolation was up, Sammi said: “She was up walking, running – she didn’t need to learn it, she just did it. She started talking, eating, drinking – completely different.

“She started school as normal. She did absolutely everything that other children would.”

Sammi added: “I’m incredibly proud of her. It just makes the small milestones more special because there have been plenty of times when you think ‘I’m never going to see her do that’.”

Mia still has to take medication every 12 hours, visits the transplant clinic every four to six weeks and will need another transplant at some point in the future, but hopefully that will be timed so she never becomes as poorly as she was pre-op.

Today, like every year, Sammi said the family will celebrate Mia’s “kidney birthday” with a cake and little party – but she admits the moment is “bittersweet” as her thoughts turn to the donor family and their loss.

“To actually make that decision and for that to go ahead – I think five other people’s lives as well were saved or changed by Mia’s donor. Thank you just isn’t enough.

“How do you thank someone for literally saving your child’s life? You can’t. There’s nothing that does it justice.”

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