Thirteen children and teenagers living with juvenile arthritis have traveled from across Australia to spend an afternoon with Anthony Albanese.
The Prime Minister and his partner Jodie Haydon welcomed the children, their families and representatives of the Juvenile Arthritis Foundation of Australia to The Lodge in Canberra on Friday.
The group was the first to have afternoon tea at the Prime Minister’s Office since the change of government in May.
Mr Albanese and Ms Haydon listened to stories about how children live with daily pain, struggle to keep up in school and struggle to access the medical care they need.
As well as having afternoon tea, Mr Albanese also played rugby with some of the children.
Excitement reigned among the younger guests when they met the Prime Minister’s dog, with one child bringing a tiny shirt as a gift for Toto.
Juvenile arthritis is a serious, incurable, and potentially debilitating autoimmune disease that can lead to joint deformity and vision loss if not diagnosed and treated early.
It affects 6,000 children in Australia, making it one of the country’s most common chronic childhood diseases.
But an acute shortage of specialized services means many families have to travel long distances to get to appointments and get the help they need.
Such is the case of Baby Willah, who was Mr Albanese’s youngest guest at just 18 months.
Willah and her parents live in regional Victoria, which means they have to make frequent and expensive trips to Melbourne to access specialist care, including monthly blood tests and regular eye exams.
Queensland teenager Addison Sharp also met with Mr Albanese on Friday.
Miss Sharp, 16, has had multiple surgeries including a knee replacement and surgery on her jaw.
Her mother said it took the family four years to get a diagnosis after she first developed symptoms of the disease.
Miss Sharp wants to become a pediatric rheumatologist to help other children living with the disease, but her own illness means she has to deal with constant pain and is forced to miss a lot of school.
Labor MP and veteran pediatrician Mike Freelander also addressed the children at The Lodge.
JAFA founder Ruth Colagiuri said it was time to bring resources to juvenile arthritis to the same level as other similarly serious and prevalent childhood diseases.
“A diagnosis of juvenile arthritis can be as young as 12 months of age and can mean lifelong pain and disability,” Associate Professor Colagiuri said.
“Much of this burden could be avoided with earlier diagnosis and referral to specialized pediatric rheumatology services.”
JAFA Chairman Andrew Harrison said Friday’s event would help raise awareness of juvenile arthritis, adding that the condition is still “virtually unrecognized” in Australia despite the fact that it affects so many families.
A federal parliamentary investigation into rheumatic diseases in children made 15 recommendations earlier this year, including tripling the number of staff in pediatric rheumatology by 2030.
Originally published as PM hosts Afternoon Tea at The Lodge with children living with Juvenile Arthritis