Berkeley Vale youngster Archie Lamond-Chafe was one of 13 children from around the country living with juvenile arthritis to be invited to have afternoon tea with Prime Minister Anthony Albanese at The Lodge in Canberra recently.
Archie even got to kick a football around with the PM.
The Juvenile Arthritis Foundation (JAFA) said the event was significant in raising awareness of the disease and increase specialist services to treat it.
Albanese heard from the 13 children, their parents and JAFA representatives how children are living with daily pain, struggling to keep up at school and having difficulty accessing the medical care they need.
Archie’s mother, Renee Chafe, said she started to notice he was different to other children when he was three.
“He would wake up crying nearly every night, he would be upset in the mornings, he wouldn’t go for a walk or ride his bike, and he wanted me to carry him everywhere,” she said.
“At day care they noticed he wouldn’t socialise with the other kids or talk to anyone.
“That Christmas he started limping and by Christmas morning he couldn’t walk.
“On Boxing Day I took him to the Emergency Department and they sent us home saying it was a reaction to a viral infection he had recently.
“That night he woke up every hour screaming and punching his knees and by the next morning he couldn’t stand.
“I took him back to the ED; this time they consulted with Westmead Hospital and a paediatric rheumatologist got them to do a few different blood tests and X-rays.
“Archie was put on a strong anti-inflammatory medication and his pain finally started to be more manageable (although) he still kept limping.
“A few months after Christmas we got an appointment in Sydney with this same paediatric rheumatologist.
“Archie was diagnosed with Juvenile Idiopathic Arthritis and went in to Westmead Hospital to get corticosteroid injections into the joints of his knees and ankles to prevent joint damage and help manage his pain.
“He has some deformity in his knees, which he may grow out of because of his age.”
Chafe said Archie’s ankles and feet are also affected.
“He takes strong anti-inflammatories when the pain gets too much, or he starts limping,” she said.
“He has regular appointments with a paediatric rheumatologist in Sydney and has three-monthly check-ups with an ophthalmologist as loss of vision is also possible for children who have juvenile arthritis.
“Next year he starts school.
“I am unsure how he will go as he often gets fatigued and/or is in pain and needs to be able to rest at these times.”
JAFA Chair Andrew Harrison said juvenile arthritis affects up to 10,000 children in Australia but is virtually unrecognised.
“For these children to be able to speak directly to Mr Albanese about living with juvenile arthritis is a huge step forward in the work we have been doing and goes a long way to helping put JA on the map,” he said.
“We are sincerely grateful to have the opportunity to engage with the highest level of political leadership with the aim of working together to help these children.”
JAFA founder, Associate Professor Ruth Colagiuri, said, a diagnosis of juvenile arthritis can occur as early as 12 months of age and can mean a lifetime of pain and disability.
“Much of this burden could be avoided by earlier diagnosis and referral to specialist paediatric rheumatology services,” she said.
“This would ensure that no child remains undiagnosed until they develop disabling joint complications and loss of vision.
“Children with juvenile arthritis deserve better; it’s time to bring resources for this painful disease up to the same level as other similarly serious and prevalent childhood conditions.”
Chair of the Australian Paediatric Rheumatology Group, Dr Ben Whitehead, said Australian services for children with arthritis fall well below paediatric rheumatology standards in other equivalent countries, and below Australian standards for other serious chronic childhood diseases .
In March this year, a landmark Parliamentary Inquiry into Childhood Rheumatic Diseases made 15 recommendations to the Federal Parliament including tripling the paediatric rheumatology workforce by 2030.
JAFA is the primary organisation representing children with juvenile arthritis and their families in Australia and was named Emerging Non-profit of the Year in the 2021 Third Sector Awards.
Terry Collins