Family of three-year-old boy desperately waiting for kidney transplant urge people to sign donor register

Harry Shelford, from Newton-le-Willows, was only six days old when his mum Natalie Thomas was given the news that her tiny baby had a rare form of chronic kidney disease.

Harry now

After spending most of his life in Alder Hey Children's Hospital, taking more than 20 medications each day alongside injections, his family were told in June that their "happy boy" is on the organ donor waiting list.

His grandmother Diane Parkinson, 48 and mum Natalie, 24, are sharing Harry's story for the first time in a bid to raise awareness of Organ Donation Week (September 2-9) and encourage others to share their wishes.

Diane said: "We had no idea anything was wrong until he was six days old, when we got a phone call to say 'Harry is desperately poorly can you bring him back to hospital?' So we did and they did an emergency scan and sadly they found that he had more than 30 cysts on both kidneys.

Harry has had CKD all of his life

"They said he was very poorly and forwarded us to Alder Hey Children's Hospital for treatment where they told us he was fighting for his life.

"He was all tubed up and our lives just changed forever.

"We were called in to see the doctors a few days later who said: 'have you ever heard of chronic kidney disease?' We said 'no' and they said 'well he has stage five in both kidneys'.

"That's when we were also told he has Cystic Renal Dysplasia due to the cysts, which is quite rare as children with Harry's condition don't live that long.

Harry is on the waiting list for a kidney transplant

"His kidney function was at less than 10 per cent and they told us the next step would be dialysis.

"But even though he got stronger and stronger he was constantly sick, so he had a gastronomy feeding tube fitted to feed him, which we do ourselves at home with community nurse Karen.

"He doesn't get to have the freedom other little boys have."

Harry has more than 20 medications a day, a 10 hour overnight feed, one injection once a week and growth injections every day.

Diane added: "Sadly now he cries every day in pain because he's got renal bone disease due to his condition and a few weeks ago he got a little wheelchair to help with the pain.

"He says 'ouch mummy, nanny, sore knees today' and the condition has caused him to be really tiny too due to poor growth.

Harry with mum Natalie and nan Diane

"But still when we were called into Manchester Royal Children's Hospital in June this year, we were still stunned when a surgeon sat us down to say 'we think it's time that Harry needs a transplant sooner rather than later'.

"Sadly we all got tested and we are not a match so six weeks ago be went on the donor waiting list.

"Not many surgeons are willing to do the surgery because it is risky but Dr Tavakoli said he will."

Natalie added: "After hearing the story of Violet-Grace and what her parents did, it inspired us to share our story because this is the other side too.

"There are families like us desperate for a chance for their loved ones to get an organ and people like poor Violet and her family who make that decision which in her case saved two lives."

Mum-of-four Diane said: "It could be someone in a car crash or anything and if we get a call we'll come running to the hospital for that chance for a better life for Harry.

"You don't think about it till it affects you, but organ donation is so important, it literally saves lives, people who sign the register are heroes.

"Once you are dead you don't need those organs anymore and lives, like Harry's can be saved, we are now on the register and we want to encourage people to share their wishes if they want to donate too.

"If Harry gets a kidney he will always know it came from a hero, we will always tell him how someone died so he could live and to thank them every day of his life."

For more information on Organ Donation or to sign the register go to organdonation.nhs.uk.