Barney’s Story

Barney was born with chronic kidney disease, which will lead to Kidney failure in the future.

Barney currently regularly visits the Children’s Kidney Centre for check-ups which will increase as his condition becomes more unstable. He has regular blood tests, scans and meets with both his consultant, bladder nurses and his surgeon.

Barney’s mum tells us about her son’s condition.

What was it like for you when you were told about Barney’s condition?

We found out at Week 34 of pregnancy when we had an additional scan. They spotted some potential cysts on the Kidneys and later told it was a condition called PUV, I had no water left and it was all sitting in Barney’s renal system.

We were told his bladder was badly damaged as well as both Kidneys.

We were warned that Barney wouldn’t live more than an hour after birth. It was the worst day of our lives.

How does Barney’s condition currently affect him?

Barney currently has a vesicostomy high up on his tummy to enable him to pass urine. He takes medicine to calm his bladder and self-catheterises 3 times a day. 

He’s also at that age now where he starting to realise he’s a little bit different to the other children which must be confusing for him but is quite upsetting for us as parents.

Does Barney have any favourite toys, songs or children’s TV shows which help to sooth him when he is in discomfort?

He likes to watch Paw Patrol and Blaze & The Monster Machines, which seems to take his mind off things.

His biggest love is his Dinosaurs, on a recent museum trip he bought himself a cuddly Triceratops out of his Birthday money who he named ‘Chomp’ … He takes him everywhere.

What do you think are the main benefits of having events such as the Walk For Life, the Children’s Christmas Party and Cardiff 10K?

The Christmas party is amazing, poorly children get to be children for the day as well as parents meeting to support each other . The Walk for Life brings people together who have had some experience of Kidney Disease as well as raising awareness.

Do you think it’s important to fundraise for and support Kidney Wales? If so, why? 

Definitely! This money raised supports families in their darkest moments. It paid for a play therapists who entertained Barney while he had his bloods checked. It provides support workers who have helped us claim money from the government to help us with Barney’s illness. Without the Kidney Wales family, we would be at a total loss