(L-R) Evie Buttsworth (3) and Indigo Buckman (6) both suffer from juvenile arthritis. Photo: Rohan Thomson
EVIE BUTTSWORTH is a bright and bubbly three-year old who dreams of being a ballerina and likes playing dress-ups with the family cat. But she is also fighting a crippling illness that could put an end to her dancing. Evie has juvenile idiopathic arthritis, a disease more commonly associated with octogenarians, and earlier this year she was diagnosed with uveitis, an eye condition that left untreated would have caused blindness before she entered primary school.
About 20 per cent of children with juvenile arthritis develop uveitis. Of those, 30 to 40 per cent experience severe loss of vision or blindness.
Luckily, Evie's mother Vicky Evans is an optometrist and was vigilant in ensuring her daughter was screened for the condition every three months.
Evie Buttsworth, 3, suffers from juvenile arthritis. Due to the disease, Evie is losing her sight. Photo: Rohan Thomson
Evie's uveitis was caught before damage was done, but the only drugs that halt the disease also cause blindness if used too long.
''We are walking a tightrope,'' Ms Evans said.
Ms Evans doesn't want sympathy - she wants to raise awareness about uveitis and juvenile arthritis. Last week the family attended the first Big JIA Walkathon in Canberra to raise funds and awareness of juvenile arthritis.
''When we had the diagnosis for Evie we felt really alone,'' Ms Evans said.
''There was no support group in Canberra … and through the walk we want to create a kit for newly diagnosed families with doctors' numbers, information about uveitis screening, standards of care and about drugs the children will have to have.''
The event raised $20,000.
The chief executive officer of the Arthritis Foundation of the ACT, Helen Krig, said four out of every 1000 children have juvenile idiopathic arthritis with more than 35 children in the ACT being treated by rheumatologists.
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