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\u201cIt\u2019s the not knowing that\u2019s the hardest part\u201d \u2026 mum Sandi and Addy (left), with her dad Ben and younger brother Owen. Photo: Canberra Hospitals Foundation.<\/p>\n
Driving to the emergency department with her 11-year-old daughter, Sandi remembers thinking quite clearly she wasn\u2019t sure what to expect when they got there because \u201cit wasn\u2019t urgent\u201d.<\/p>\n
The only outward sign Addy was unwell was a slight temperature \u2013 that and the fact her daughter just seemed \u201coff\u201d, Sandi says.<\/p>\n
In the months leading up to that day in February 2025, Addy had seemed more anxious than usual, she\u2019d complained about sore knees and joints, and been increasingly reluctant to go to school, according to the Canberra mum of two.<\/p>\n
They\u2019d consulted a GP, who attributed the episodes to a routine viral infection or a response to mental health challenges.<\/p>\n
\u201cWe just assumed it was the end of the school year (Addy was in Year 5) and when she said she wasn\u2019t feeling well and wanted to stay home, we thought it was anxiety around school,\u201d Sandi says.<\/p>\n
Sandi can\u2019t pinpoint exactly what it was that drove her decision to take Addy to the ED that day, \u201cbut something told me to take her to hospital\u201d.<\/p>\n
Within hours of stepping through the hospital doors, blood tests would reveal those vague symptoms hid something far more sinister.<\/p>\n
\u201cYou know when the doctor walks back in the room and their disposition is completely different that something is seriously wrong,\u201d Sandi says.<\/p>\n
\u201cHer bloods were through the roof; her liver wasn\u2019t great, her kidneys weren\u2019t great \u2026\u201d<\/p>\n
Addy was rushed from North Canberra Hospital to Canberra Hospital for specialist assessment. A team at Westmead Children\u2019s Hospital would also come on board.<\/p>\n
\u201cInitially they thought it was a massive infection \u2026 when they said they still don\u2019t know, well the \u2018C\u2019 word jumps into your mind,\u201d Sandi says. \u201cIt was the hardest time.\u201d<\/p>\n
More than a year later and Addy still doesn\u2019t have a definitive diagnosis \u2013 instead the family has been thrust into an ongoing and complex autoimmune battle.<\/p>\n
Sandi says not knowing exactly what\u2019s wrong with your child is one of the hardest parts of this journey.<\/p>\n
\u201cIt\u2019s like you need to name it to tame it,\u201d she says. \u201cIf we could just give her something from our bodies to make her better, we would.<\/p>\n
\u201cWe haven\u2019t been told this is life-ending, but it is life-impacting \u2026 we still don\u2019t know what her future will be like.\u201d<\/p>\n
In addition to the dedicated teams at Canberra Hospital and Westmead, Addy has come under the care of Associate Professor Simon Jiang, director of the newly opened Centre for Personalised Medicine at Canberra Hospital.<\/p>\n