She wants to see an outreach clinic in Armidale, along with a clinical nurse consultant in rheumatology, who could assist specialists in organising appointments and medications.

The disease is a type of inflammatory arthritis which can develop in children under 15, with patients suffering from joint pain, stiffness and reduced mobility.

Ms Bristow’s 10-year-old son Lucas knows this all too well. 

Lucas was diagnosed with the disease in October after noticing a swollen toe and suffering from severe pain. 

After two different trials of antibiotics, repeated blood tests and multiple visits to their paediatrician, Lucas was eventually diagnosed.

Lucas and his family regularly have to make trips to Sydney to see a specialist, which can put a financial strain on the family, 

“It is about at eight hour drive from here; it really adds up,” Ms Bristow said.

Arthritis NSW chief executive Jannine Jackson said for some forms of arthritis, there is a two per cent mortality rate and can “lead to permanent disability and blindness’.

She urged NSW Health to fund 

just one paediatric rheumatologist, with just two full-time paediatric rheumatologists in the state.