Parents in desperate plea for kidney donor

The parents of a teenager who has end-stage kidney disease are appealing for a living organ donor to save their son's life.

Lucas Burrows, 14, from Wakefield, has to spend 10 hours a day connected to a dialysis machine.

His father, Dan, said dialysis was "keeping him alive" but it was a "painful and barbaric" way for a 14 year old to live.

The only option for Lucas is a kidney transplant, but his family and friends are not a match and they are hoping a stranger will come forward.

The teenager has been seriously ill since December 2022, when he developed dense deposit disease (DDD), a rare and aggressive condition affecting the kidneys.

"It was almost overnight," Mr Burrows said.

"We had a healthy 12-year-old boy and then he came and said 'Dad, my wee's a funny colour' and it was that moment of dread, the moment we all fear in life where you look and you know something is very wrong."

Lucas spent three months at St James' Hospital in Leeds, before developing another rare condition, posterior reversible encephalopathy syndrome (PRES), which causes swelling in the brain.

Dan Burrows said it had just been a "downward spiral".

"The kidney disease worsening, the side effects worsening, and then he had a seizure and was in a coma for a month, and all this when he was perfectly normal before," he said.

"You just think 'how did we get here?' It's an absolute nightmare."

Mr Lucas said the odd of having the two conditions together was "one in 60 million".

"Somehow he made a full recovery from the PRES which the doctors said was unbelievable."

Although Mr Burrows is a blood and tissue match for his son, he is not able to be a donor because of an antibody Lucas carries which means he could reject the kidney.

He said it was one of his "worst moments".

"I'd give him both my kidneys and go on dialysis myself to give him a better life so to find out there was something preventing his body from accepting my kidney was devastating," he said.

Lucas' mum, Lucy, was also tested but she is not a blood match, which she said had "absolutely floored" her.

The teenager has a catheter in his stomach and has to be connected to his dialysis machine every evening from about 21:00 to 07:00.

"There's so much stuff I want to do that I can't," he said.

"I’m stuck in my room a lot and the worst part is that I'm thirsty all the time but I can't drink.

"My friends keep asking me when I can go back to hockey training but I can't.

"I'm not even scared anymore. I just really want to have a transplant and get it over with.”

According to the NHS, kidneys from living donors are more likely to work straight away and remain working for longer.

Once a living donor is found it can take between three and six months for the transplant, while the average wait for a deceased donor in the UK is up to three years

Mr Burrows said the family are becoming desperate.

“Dialysis is keeping him alive, but it's taking away every freedom he should have as a 14 year old," he said.

"He's a prisoner in his own bedroom. It’s painful and barbaric in a way, but ultimately it's keeping him alive."

He said he realised it was a "huge ask" to plead for a stranger to come forward.

"I can't believe the friends who've already offered, that's what gives me hope," he said.

"But so far no one has been a match for various reasons so we're getting desperate now.

"We have to keep trying for Lucas, that's our job as parents. We know there are matches out there.”

Fiona Loud, policy director at Kidney Care UK, said the story showed how important living donation was.

"Approximately 1,000 transplants take place through living kidney donations every year (around one third of annual kidney transplants)."

She said the transplant waiting list was the longest it had been in a decade.

"there has never been a more important time to talk about organ donation, raise awareness of the impact of transplantation and to register your organ donation decision on the Organ Donor Register.

"We wish the Burrows family luck with their search for a suitable donor and hope that Lucas, and all of the 254 children on dialysis in the UK are able to have a transplant as soon as possible.”

Anyone who feels they can help Lucas can email the Leeds transplant team, external.

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