A YOUNG North Wales boy who was ‘always thirsty’ has been diagnosed with an extremely rare condition, which only affects 2,000 people worldwide.

Ryley Standell, 9, from Kinmel Bay, is awaiting a kidney transplant and has spent most of his life in and out of hospital.

Mum Jamie said when Ryley was born there was ‘nothing to alarm them’ as he was ahead of his milestones and was walking at ten months old.

However, when he went to play group at the age of three, staff raised concerns that Ryley was always asking for a drink.

After many the issue ‘niggled’ at his parents and many tests later, Ryley was eventually diagnosed with a rare genetic disease called Cystinosis, which attacks many parts of the body – kidney’s first.

Ryley had to go to Alder Hey every four weeks for check ups and tests but after the good news that dad Chris was a donor, things were finally starting to look up.

Jamie and Chris brought their wedding forward from October last year to March 2020, just one day before lockdown, in the hopes of completing the transplant.

But then lockdown hit, pausing the procedure which means Ryley, now 9, has to undergo 18 hours of dialysis every day.

Jamie said: ““Before he was born, I was overdue, but there were no problems, nothing to alarm us.

“He was a big baby, eating and drinking well, he was well ahead of his milestones, walking at 10-months so we didn’t think anything was wrong.

“When he went to playgroup, one of the ladies pulled me over to say he was asking for drinks in between his milk. Again I thought nothing of it, just that he likes his juice but I took him to his GP.

“He was referred to hospital for blood tests but none were taking they said he was fine.

“I had a gut feeling so I took him back to the doctors and found the same, so he was referred back to hospital.

“He had bloods which found all his salt levels were out of balance.”

Doctors originally thought Ryley had diabetes but his blood sugar levels were showing as normal, so he had a kidney biopsy and Alder Hey Children’s Hospital then got involved.

Jamie said: “He is hooked on to a machine for 18-hours a day, he can’t do much.

“When procedures picked up again, Chris needed tests, they tried to push these before Christmas but then he needed more tests and another lockdown hit.

“He’s suffering day in and day out so we had to do something.”

Ryley can now only drink 900ml of fluid a day and struggles daily.

The family launched a fundraiser in a bid to raise £85,000 for private treatment and aftercare but stressed that if NHS treatment does come first, the money raised will be donated to charity as well as the after care of the young boy.

Jamie added: “It’s put our lives on hold. We can’t plan anything, we can’t give Ryley anything to look forward to because we don’t know when he can get his treatment.

“We are living in limbo and he’s struggling so much.”

Cousin Linsey Ocarroll said time 'is not on their side' as Ryley should be living 'like any other little boy'.

Anyone wishing to donate can do so online at https://www.justgiving.com/crowdfunding/hayley-trimm