Thirteen children and teenagers with juvenile arthritis traveled from all over Australia to spend an afternoon with Anthony Albanese.
On Friday, the Prime Minister and his partner Jodie Haydon welcomed the children, their families and representatives from the Juvenile Arthritis Foundation of Australia to the Lodge in Canberra.
The group was the first to have afternoon tea at the Prime Minister’s official residence since the change of government in May.
Mr. Albanese and Ms. Haydon listened to stories of how children live with daily pain, struggle to keep up with school and have difficulty accessing the medical care they need.
As well as afternoon tea, Mr Albanese played a game of rugby union with some of the children.
There was excitement among the younger guests to meet the Prime Minister’s dog, a child bringing a small shirt as a gift to Toto.
Juvenile arthritis is a serious, incurable, and potentially debilitating autoimmune disease that can lead to joint deformities and vision loss if not diagnosed and treated early.
It affects 6,000 children in Australia, making it one of the most common chronic childhood illnesses in the country.
But a severe shortage of specialist services means many families have to travel long distances to appointments to get the help they need.
Such is the case with 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 checks.
Queensland teenager Addison Sharp also met Mr Albanese on Friday.
Miss Sharp, 16, has already had several surgeries, including knee replacement and jaw surgery.
His mother said it took the family four years to get a diagnosis after they started developing 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 has been forced to miss a lot of school.
Labor MP and veteran pediatrician Mike Freelander also spoke to children at the Lodge.
JAFA founder Ruth Colagiuri said it was time to bring resources for childhood arthritis up to par with other equally serious and widespread childhood conditions.
“A diagnosis of juvenile arthritis can occur as young as 12 months old and can mean a lifetime of pain and disability,” said Associate Professor Colagiuri.
“Much of this burden could be avoided with earlier diagnosis and referral to specialist pediatric rheumatology services.”
JAFA President Andrew Harrison said Friday’s event would help put childhood arthritis on the map, adding the condition was still “virtually unrecognized” in Australia despite affecting so many families.
A federal parliamentary inquiry into childhood rheumatic diseases earlier this year made 15 recommendations, including tripling the pediatric rheumatology workforce by 2030.
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