When Madison was just four-years-old, she developed a rash, which her parents initially thought was just dry skin similar to windburn. However, it ended up in a diagnosis of juvenile dermatomyositis – a rare autoimmune inflammatory muscle disorder which causes a red rash and progressive muscle weakness.

“We noticed she was having issues standing up from chairs, or trying to climb into bed – little things like that. She was complaining of some pain. She went from being okay, to not okay pretty quickly. The symptoms came on hard and fast after the rash,” Madison’s dad, Chris, said.

“Her body behaved like that of a frail old woman. If a 90-year-old and Madison – a supposedly fit, happy four-year-old – raced up a set of stairs, the 90-year-old would win by a mile.”

Chris, and her mum, Lisa, took her to a couple of different GPs, but kept hearing the same things – it was growing pains, the rash was dry skin, sunburn or windburn, and it would all pass in time.

“Parental instinct took over, and Lisa and I were adamant she wasn’t OK. We booked into a paediatrician in Brisbane, and luckily, he had seen a similar case of juvenile dermatomyositis many years ago, so he sent us straight to the QCH for testing, which confirmed it.”

“From the time we saw the first GP to her receiving diagnosis was 9 days which is incredibly fast! We are really grateful that it didn’t take longer – we have been told with rare diseases like this, it can take months to diagnose,” Chris said.

Once at the QCH, Madison was immediately admitted to receive what would be the first of many rounds of treatment.

Madison now visits the QCH monthly to receive a steroid infusion, which helps fight the symptoms of the disease, and improve her muscular ability.

Madison just received what is hoped to be her last steroid infusion at QCH, but she will continue to take oral steroids at home every morning and visit the hospital each month for IVIG infusions.

“We don’t know what is going to happen with her treatment in the future. Her disease is rare, so we just take it all day by day. Since she started treatment, you wouldn’t even know that Madison is battling anything.”

Despite her challenges, Madison remains an upbeat five-year-old who loves gymnastics, swimming, playing with her two-year-old sister, Brooklyn, and watching the car racing (a hobby she has proudly picked up from her dad).

“She’s young – so she doesn’t understand the magnitude of what’s going on, so to her, it’s just life. She just keeps on fighting. There has been one time where she was unable to do the same things as other kids because of her muscle weakness, and that made her upset. She came to Lisa and said, ‘I didn’t ask for this disease!’, which was difficult. But in general, she’s been a total trooper.”

WORD Day

Rare Voices