EXCLUSIVE Mums relentless fight for her three-year-old son unveils rare disease after doctors wrote off his symptoms as allergies
In the quiet moments of motherhood, when a childs tiny hands reach for yours, there lies an unspoken promise to protect them from harm.
In the quiet moments of motherhood, when a childs 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 mums 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 wasnt 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 Childrens 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.
Saras three-year-old son Dante was dismissed as having allergies by multiple GPs
But his mother persisted, until one doctor suspected something wrong with Dantes kidneys. After a series of tests, he was diagnosed with the very rare nephrotic syndrome
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 havent. Theres a shock when you first find out and you dont 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.
Dantes rare kidney disease can cause swelling, particularly around the eyes
Since his diagnosis in late 2024, little Dante has been hospitalised three times
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.
Its been really hard for him, people think he looks fine on the outside but hes 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, dont just let it go, stay persistent because I dont know what wouldve happened if I didnt 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, its too late.
Kidney disease is known as the silent killer in Australia (little Dante is pictured in hospital)
Sara encouraged parents to stand their ground and trust their intuition if they felt their child had been misdiagnosed by the medical profession (Dante is pictured in hospital)
We find our GPs are under pressure, as we all know, he said.
So often theyre not doing the battery of tests that are needed for diagnosing kidney disease. Its quite a simple test. Blood pressure, blood and urine. And so what were finding is they often miss out on the urine test.
Forbes said kidney failure was life-altering.
Youre on dialysis three times a week, five hours at a time. Its hard to work. Its hard to travel. It puts a huge burden on families, he said.
Theres a dialysis capacity crisis - its 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. Thats 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.