For some parents in Wagga, it is a regular occurrence.

Beni Ali, 11, battled leukaemia and her family was relieved when she went into remission, but it was short-lived with a lupus diagnosis following close behind.

Joshua Byrne,13,  was diagnosed with juvenile dermatomyositis, a rare autoimmune condition. Both Beni and Josh routinely miss at least one day of school every eight to 12 weeks to travel the long distance to Sydney for one appointment.

Beni’s mum, Shaleen Ali, said she is constantly in awe of her daughter’s strength in dealing with her condition.

“My top priority is Beni missing school,” she said. “That is my main concern because since she had finished her treatment for cancer we had hoped she would have a normal life, but now she is still missing two days of school for a two-hour appointment.

“There are also the added costs of [Beni’s dad] Nazeem missing work, the hotel expenses, petrol – flying is too expensive –  and the price of the appointment.”

Mrs Ali estimates every eight to 10 weeks they spend between $700 and $900 on the trip.

“That’s not including any unexpected visits,” she said. “The hotel itself can be upwards $400 if there is a major event on. She is also still an oncology patient and these appointments are not necessarily all given on the same day.”

Mrs Ali said despite all these costs, her main concern is still Beni.

“It is exhausting for Beni,” she said. “She also misses out on things at school. For the next appointment, she will have to miss out on an excursion.”

Beni didn’t start kindergarten until term four due to her leukaemia.

“That's already heartbreaking enough,” Mrs Ali said. “She catches up on her work and no parent wants to see their child be ‘different’ and you can't tell kids not to label other children. Her biggest fear is that she would be labelled ‘the sick child’.”

Mrs Ali said Beni’s oncologist comes to Wagga every three months as part of an outreach program.

“It was so handy,” she said.

“It was only in extreme emergencies that she had to go to Sydney and it made her feel more comfortable having the appointment here and when they come here they develop a relationship. 

“Our kids are just as important as the city kids and they deserve to have access to the necessary resources.”

Josh’s condition means his immune system thinks that his muscles are an enemy infection needing to be destroyed.

Dominic Byrne, his father, said Josh is on a regime of drugs that seek to control the inflammation until the condition, hopefully, goes into remission over the next few years. Despite battling his disease, Josh cleaned up at the Wagga Eisteddfod this week. He won first prize in every section he entered.

“Josh is showing incredible grit and determination to overcome his illness,” Mr Byrne said. “He is a great role model for kids who have to face adversity.”

It was a long road of doctors visits and health programs to try to figure out what was wrong with Josh.

“Josh was deteriorating for several years - almost imperceptibly for the longest time - before he was diagnosed,” Mr Byrne said. “Initially we thought he was just getting a little unfit and needed to ride his bike a bit more and play the Xbox a bit less.”

Numerous blood tests cleared him of any illness because juvenile dermatomyositis does not show up on any blood tests, Mr Byrne said.

“None of the physicians we saw in Wagga could diagnose what was wrong with him,” he said.

“I engaged a physio to tailor a fitness program for Josh, and when Josh was incapable of doing a crunch – or even lifting his head off the floor – I knew something was seriously wrong. 

“By the time we managed to get Josh to see specialists in Sydney, he was getting too weak to get out of bed or tie up his shoelaces on his own.”

After his diagnosis, the Byrne family have continued to make the arduous trip to Sydney, often doing it in one day as Mr Byrne cannot get more time off work.

“Since May last year we have been travelling to Sydney Children's Hospital, Randwick, to see the paediatric rheumatology specialists,” Mr Byrne said.

“Last year we were travelling to Sydney every month or two. This year, we make the trip about every three months.”

Mr Byrne said Josh doesn't like drawing attention to himself and doesn't like being treated any differently from anyone else.

“This has caused a few difficulties at school, because Josh's peers have no idea how weak Josh is, and he doesn't have the strength to engage in the "rough and tumble" of school life,” he said.

Josh himself said he wished there had been doctors in Wagga that could have picked up his condition earlier.

“I just kept on getting weaker and weaker and it was really frustrating,” he said.

Both the Byrne and Ali families hope through increased community awareness, an outreach program can be brought to Wagga to cut out the exhausting trips.

Mrs Ali and Mr Byrne said although autoimmune diseases don’t have high profiles like cancer, they still impact many families.

Davinder Singh-Grewal is a paediatric rheumatologist in Sydney who treats both Beni and Josh as well as other children from the Murrumbidgee Lower Health District.

“There are other outreach services provided for other subspecialties, which have been really well received and provide families with the care they need,” he said.

“Currently other specialties including oncology (cancer), renal (kidney) and neurology provide outreach services in Wagga minimising the impact of illness on these children and their families.

“In rheumatology, we haven't been able to achieve that yet, but it’s been because we haven’t been able to find the funding to do it.”

Dr Singh-Grewal said this is in part due to the fact it is a lesser known disease.

“There are at least 150 children living in the Murrumbidgee and Far West NSW requiring ongoing paediatric rheumatology care,” he said.

“If we had the service, people outside of Wagga could come to receive the care.”

Dr Singh-Grewal said the families’ stories get to him and he hopes he can provide the care they need closer to them.

“Families drive five or seven hours one way and my appointments are often only 15 minutes,” he said.

“Often they have to stay overnight as well.

“For the kids in Sydney they will only miss a couple of hours of school, but the families in Wagga have to make a massive commitment.”

Dr Singh-Grewal said for a very modest cost, the issues can be dealt with.

"There is a direct cost to families which is intense but then there are indirect costs of missing school and missing work, which I think is harder to calculate," he said.

"If you put two days of missed work – and that's often the case – that's not a great thing for a region either."

Dr Singh-Grewal has put together a proposal for local politicians to review and encourages the Wagga community to back the families trying to bring the services here.

“Children in regional areas deserve the same level of care as children in metro areas,” he said.

“A comprehensive multidisciplinary outreach service would cost $45,365.40 per annum with expected measurable savings of over $20,000 per annum and would avoid loss of productivity from school and work absences resulting from clinic visits in Sydney.”

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