Kate woke to the sound of her daughter screaming in agony but it took months to get answers

Ava Swartz was just two when she woke up screaming with a swollen knee and a fever, the first signs of a life-long illness that could leave her with permanent disabilities.

Mum Kate, who was pregnant at the time, raced to her daughter's bedside as her screams echoed through their Melbourne home.

"She woke up with a huge swollen, hot knee and she was screaming, screaming in pain, and she had a temperature with it," Kate tells 9Honey.

Terrified, she rang her own mother who is a nurse and who urged her to get Ava to the emergency department immediately. Something was very wrong.

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At their local hospital, doctors revealed Ava may have been suffering from septic arthritis, a bacterial infection that often affects leg joints.

They transferred the two-year-old to another hospital where she was treated for a bacterial infection, including two surgeries under general anaesthetic to wash out her knee.

Kate anxiously waited for her daughter's symptoms to improve, but something far more sinister was going on inside her tiny body.

"When she didn't have the typical recovery that they were expecting, they passed her onto their rheumatology team at the hospital to look further into it," Kate says.

It was around that time she heard the words 'juvenile arthritis' for the first time, a long-lasting, chronic disease that can cause persistent joint pain, swelling and stiffness.?

Juvenile arthritis can be difficult to diagnose and only rheumatologists can formally diagnose it, so doctors started looking into Ava's symptoms.

For several months, the hospital's rheumatology team worked on treating her pain, which had left her with a pronounced limp on her bad leg. Then something changed.

Months after she woke screaming, another one of Ava's joints began to swell. It confirmed the devastating diagnosis that changed everything for her family.

"It really was a grieving process for me and my husband."?

"That's when they said, 'she has juvenile arthritis'. It was quite shocking. We weren't expecting it," Kate admits, adding that she knew nothing about the disease.

She quickly learned that Ava's illness can appear at different ages and in different ways, but that it was incurable, painful and could even cause permanent disability.

It changed everything about the life she had envisioned for her daughter, as she watched Ava go from walking and running normally to barely being able to stand due to pain.?

"We got the diagnosis about a month before our third baby was born, and it really was a grieving process for me and my husband. I've had a lot of grief about it," Kate recalls.?

"No one counts on having a sick child. She was two and a half when it started, I had a one-year-old and I was pregnant with our third¡­ that made things even more difficult."

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The first 18 months were a rollercoaster of testing different medications to manage Ava's pain and arthritis symptoms, with over 60 medical appointments in under two years.

One of Ava's legs grew three centimetres longer than the other as a side effect of joint inflammation. Medication made her immunosuppressed, which was a challenge during COVID-19.

"It really did feel like we were in survival mode and it was like these never ending tsunami waves were just hitting us over and over again, and hitting Ava," Kate says.

To date, she's had both knees, her neck and her wrist joints affected by painful juvenile arthritis and though she's now in medicated remission, it comes at a high cost.

Though Ava was surprisingly resilient for such a young child, she needed weekly injections, regular checkups and blood tests that led her to develop an intense phobia of needles.

She now resists injections and Kate or her husband "have to immobilise her and restrain her" to administer weekly injectable medications at home.

"It really did feel like we were in survival mode."

At just six, Ava also has crippling separation anxiety and refuses to go to school due to the trauma she's built up from so many medical procedures for her juvenile arthritis.

Even basic hygiene can be a struggle - from washing her hair, to cutting her fingernails, or taking off a bandaid - and it's become a real "battlefield" at home.?

Her parents are doing everything they can to support their daughter's mental health and physical wellbeing, but it's taken a toll on the family emotionally and financially.?

"We've made conscious decisions financially in order to live closer to the city, where rent is much higher, which is where our treating hospital is," explains Kate, who has also had to take extended unpaid leave from her job.

Arthritis research and health services are chronically under-funded in Australia and are at their lowest level in a decade, making it almost impossible to get care outside of major cities.

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It's even harder for children with juvenile arthritis, as there are just 13 clinical full-time equivalent paediatric rheumatologists in Australia to treat up to 10,000 young people with it.

That's less than a quarter of the number required to treat all those children, and families from culturally and linguistically diverse backgrounds, or regional or remote areas struggle more.

"I really do despair thinking of families like us across Australia that carry an even heavier burden than we have," Kate confesses.?

"We are white, we're middle class, we have, we are lucky that Victoria happens to have the most rheumatology services of any state. But even with those, there's still important gaps that we've experienced."

Now Kate is sharing her daughter's story in the face of a looming juvenile arthritis crisis as overloaded paediatric services struggle to diagnose and treat children around the country.

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This week marked the first Juvenile Arthritis Week, established by Juvenile Arthritis Foundation Australia (JAFA) to highlight the issue notably in younger people.?

"A lot of parents in our position are very frustrated and tired because there's a national crisis in terms of the care and services available for kids like Ava," Kate explains.?

"And it's pretty much unfolding silently. Our kids deserve better than that."

For children like Ava to receive timely diagnoses and adequate care, there needs to be a nation-wide push for change at every level, all the way up to the federal government.

JAFA is calling for an immediate increase in paediatric rheumatologists and specialist nurses in public hospitals to support kids like Ava with juvenile arthritis.

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It's also demanding a new commitment to address the significant gap in research funding into arthritis, which could help save the government and taxpayers money in the long run.

By investing in earlier, more effective care, children with juvenile arthritis will have better quality of life and will be at a reduced risk of developing permanent disabilities.

"There's been a really noble recent effort by a handful of politicians across the political spectrum to bring change, and I want to pay tribute to those people," Kate adds.

"But overall, the fact is there has been decades of benign neglect from federal and state governments alike for these kids."

She's urging Australians to get behind JAFA and families like her by calling for change at federal and state levels to support kids like Ava around the country.

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