Chloe

Chloe was just a typical, happy, energetic three-year-old, when she suddenly began to stumble a bit while walking. Two weeks later, her Mum, Holly, noticed that her legs felt “cold as ice” and soon after she couldn’t move them at all.

Holly took Chloe straight to hospital, where, much to her family’s distress, the immobility began to creep up to her arms, chest and neck.

After a series of tests, scans, and doctor visits, Chloe was first diagnosed with polymyositis – a type of chronic muscle inflammation. Shortly after this, red rashes appeared on her body, and she was finally diagnosed with juvenile dermatomyositis (JDM) – an extremely rare inflammatory autoimmune disease that attacks the body’s own blood cells and muscle tissue, causing muscle weakness and skin problems. Only two to four children are diagnosed with JDM in Australia each year. There is currently no known cause or cure.

After the diagnosis, Chloe stayed in hospital for over a month receiving treatment, including lumbar punctures, blood infusions and steroid treatment to help her manage the condition. Since then, she’s made great progress, and has just started a new treatment which allows her current steroid dose to be lowered.

Chloe will need regular blood infusions for the foreseeable future, but she’s not letting that get in the way of having fun like others her age.  She remains a happy, ‘headstrong” four-year-old who loves to scooter around, explore new parks and go swimming.

“Her muscles still ache a lot, and she finds it hard to do many normal activities, but she never gives up and tries her hardest to keep at it,’ Holly said.

“When it’s hot, she needs to be more cautious, wearing protective sun safe clothing and lots of sunscreen to protect her skin.”

“The biggest thing I try to remember is that each day is a new day, so try to treasure it – whether it’s good or bad. There are plenty of hard days, which last longer than you’d hope, but you can get through it.”