EXCLUSIVE Mum's relentless fight for her three-year-old son unveils rare disease after doctors wrote off his symptoms as allergies

Daily Mail​

10 hours ago

In the quiet moments of motherhood, when a child's tiny hands reach for yours, there lies an unspoken promise to protect them from harm.
For Sara, that promise was tested when her three-year-old son Dante began to swell with unexplained puffiness, his energy waned, and his once-animated spirit faded.
Despite repeated visits to three GPs, who dismissed his symptoms as allergies, the Sydney mum's intuition and perseverance led to a diagnosis that many had never heard of - nephrotic syndrome.
The rare kidney disorder, which causes the body to lose excessive protein through urine, would become their new reality, where every day was a battle against an invisible enemy.
When Sara was finally able to book an appointment with her regular GP, she knew straight away something wasn't right with Dante in September 2024.
'My GP said I think something is wrong with his kidneys and immediately tested his urine, something none of the other doctors did,' she told Daily Mail Australia.
What three other doctors had dismissed as allergies resulted in a two-week hospital stay and ongoing treatment at Randwick Children's Hospital.
'The first thing I did after the diagnosis was Google (the condition). It scared the c**p out of me when I saw the life expectancy,' she said.
Sara is sharing her story in the hope of raising awareness for other parents and the general population around kidney disease.
'I had never in my life even heard of nephrotic syndrome and a lot of people haven't. There's a shock when you first find out and you don't know what to expect,' she said.
Nephrotic syndrome is a rare kidney disorder that can cause various symptoms such as swelling, particularly around the eyes, ankles, and feet, as well as frothy urine, weight gain, and fatigue.
There is no cure for the condition, which can cause a loss of kidney function over time with patients sometimes requiring dialysis or a kidney transplant.
Since his diagnosis, little Dante has been hospitalised three times, with his most recent relapse in March of this year.
He takes daily medications including Prednisolone and Tacrolimus, an immunosuppressant primarily used to prevent organ rejection after a transplant.
Sara tests his urine daily to monitor protein levels.
Blood tests every three months are particularly challenging, as Dante requires laughing gas each time due to his fear of the procedures.
Sara said the invisible nature of the illness was challenging because on the outside, Dante looked like a regular child who enjoyed soccer, playing Wii Sports and hanging out with his older brother and sister.
But he will remain on medication for several years until a biopsy determines his long-term prognosis.
'It's been really hard for him, people think he looks fine on the outside but he's not fine on the inside,' she said.
Sara encouraged parents to stand their ground and trust their intuition if they felt their child had been misdiagnosed by the medical profession.
'When you know something is wrong with your child, don't just let it go, stay persistent because I don't know what would've happened if I didn't keep going back to the doctors for him,' she said.
Kidney Health Australia CEO Chris Forbes said under-pressure GPs often missed ordering crucial tests that could diagnose kidney disease early on.
He said kidney disease was known as the silent killer, with symptoms often not showing until 90 per cent of kidney function was lost.
By then, he said, it's too late.
'We find our GPs are under pressure, as we all know,' he said.
'So often they're not doing the battery of tests that are needed for diagnosing kidney disease. It's quite a simple test. Blood pressure, blood and urine. And so what we're finding is they often miss out on the urine test.'
Forbes said kidney failure was life-altering.
'You're on dialysis three times a week, five hours at a time. It's hard to work. It's hard to travel. It puts a huge burden on families,' he said.
'There's a dialysis capacity crisis - it's not as easy as picking a holiday spot and booking in treatment.
'Many people will pass away from a cardiovascular event before even reaching kidney failure. That's why early detection is everything.'
Last month, the World Health Organisation declared kidney disease a global priority, on par with cancer, heart disease, and diabetes.
Kidney Action Week kicks off on July 1, and this year Kidney Health Australia has urged all Australians to take action to protect their kidney health.