'When you arrive without kidneys everything else is up for grabs," says Ann Brehony. She is the mother of 19-month-old Rory, who requires dialysis three times a week Dublin's Temple Street Children's University Hospital.
"With Rory there are two types of day . . . dialysis days and home days. We travel with him from Salthill to Dublin on Mondays, Wednesdays and Fridays. We used to go by road but that was gruelling. So we approached the Health Board and now we fly," she said.
"On dialysis days I get Rory up at 6.30am, weigh him, take his blood pressure and give him his medicines."
Rory takes the 7.30am Aer Arann flight to Dublin and is met by the same taxi driver at the Airport. "These sound like itty bitty things but these logistics make such a difference, like knowing the taxi driver will be there with a baby seat."
"All going well we are back home by 5pm. By road there was no way we'd be back before 8pm."
Rory isn't large enough to receive a kidney yet and needs to weigh at least 10 kg (22 lbs). There are certain challenges to feeding a child with renal failure, not least his lack of appetite. "Nothing will pass Rory's lips. He is fed through a nasal gastric tube. Because he can't pee we have to measure how much goes into to him.
Rory is also an "Olympic champion vomiter".
"When he vomits you have to estimate how much he vomited and replace it."
Rory's care is supervised by Dr Atif Awan and Prof Denis Gill, consultant nephrologists at Temple Street. The redeveloped renal unit at the hospital opened in February. Funding for this € 1.2 million unit was raised by parents of patients and the public.
Dr Awan says the refurbishment will allow an increased level of activity. "It is staffed by a multi-disciplinary team which is trained to deal with all aspects of paediatric renal failure."
"Dialysis is a means to keep the children well and alive until transplant. But with all our children the goal is to transplant."
"We carried out nine paediatric transplants last year. This year our hope is for between 12 and 15 transplants. We have carried out four so far this year."
This increased activity has led to a funding application to the HSE which is currently under review. "We do need more staff; we are under pressure. Paediatric renal care is a consultant-provided service and the resource requirements are huge. It requires skilled nursing staff, dietitians, social workers and psychologists working together."
Prof Gill says the treatment standards and results at Temple Street, which is the national paediatric dialysis and renal transplant centre, are on a par with any large paediatric centre in the world.
Another infant hoping for a transplant this year is Luke Corr. The 22-month boy from Celbridge was born with Eagle Barrett Syndrome.
"He's trying very hard to walk and he's learning a lot of words," says his mother, Shirley. "He is a happy little child, loves a bit of craic."
Luke is used to dialysis having been on it since he was five months, the youngest baby to be on dialysis. "He finds the dialysis a bit harder when he is sick, or when his breathing is restricted," says Shirley.
She describes the weekly routine as very hard going.
"I'm up at 6am three mornings a week and we haven't had a break since he was born. It's hard, there's no point saying it's not. You can't drop him round to relatives and say: "there's a nappy and a bottle."
"I can't thank the staff at Temple Street enough, though. They have been brilliant. They don't just nurse the patient, they nurse the whole family."
Shirley is now looking for some nursing assistance to provide respite. "I am looking for a little bit of help at the moment. But it can be a long process to get some help."
These difficulties in securing assistance were echoed by Ann.
Nurses now travel with Rory to Dublin twice a week, allowing Ann provide a normal home life for her 4-year-old daughter Jessica.
"Where I have felt in the dark is accessing services and support. I would love to see some form of family advocacy system because it is really difficult to fight for care for your child if you don't have the skills to lobby," says Ann.
Shirley and Luke's father have told the doctors at Temple St they would be "interested in exploring the option of a living related donor transplant. If it is an option for Luke, we will do it. Any parent would do anything to get these kids on the right road."
