Clair and Ivo Padovan’s lives changed dramatically when their youngest daughter Emilia was struck down with a rare and potentially fatal kidney disorder.

Six-year-old Emilia was diagnosed with nephrotic syndrome three years ago when her mother spotted her swollen face and tummy and rushed her to St Helier Hospital.

The family stayed there for ten days while Emilia began a course of high dose of steroids that changed her character so that she “was like a Tasmanian devil”.

Mrs Padovan said: “One moment she was happy and laughing and the next, she was screaming at the top of her voice.

“She was behaving completely out of character – she was a totally different child.

“Our first Christmas after that, Emilia spent all of her time either crying under the Christmas tree or shouting from under the table.

“It was incredibly distressing and very frightening – for all of the family.”

Nephrotic syndrome – which affects one in 50,000 children in Britain – means kidneys leak protein into urine, resulting in swelling and an increased risk of blood clots.

A person with the illness will lose around 25 times the normal amount of protein in just 24 hours and other side effects include painful joints, stomach tenderness and weight gain.

There is no known cure for the condition and, if left untreated, it can lead to death.

Only a week after Emilia’s initial stay in hospital, she started to experience severe night-time headaches.

Mrs Padovan said: “One evening, her headache became so screamingly painful that we had no choice but to take her to accident and emergency at Queen Mary’s Hospital for Children.

“Emilia was incredibly lucky. After various brain scans it was decided that she did not have a blood clot, but that the headaches were due to an increase in the pressure of the fluid around her brain.

“A lumbar puncture was performed to release the pressure.

“The lumbar puncture was particularly distressing for all involved and even now, two and half years later, Emilia still finds it particularly difficult to discuss.”

Luckily, many children grow out of the condition, and many sufferers are left with no lasting damage to their kidneys.

After years of hospital treatment, Emilia has now been in remission for 22 months but she is still prone to infections, and picks up colds and illnesses very easily.

Mrs Padovan said the experience had changed the lives of the family.

She said: “It was a heart-rending, stomach-wrenching thing to go through and we struggled to come to terms with the horror of it all – it was just so frightening.

“But the staff and treatment we received from Queen Mary’s made all the difference.”

Because of their ordeal, Mrs Padovan now volunteers at Queen Mary’s Hospital for Children as a fundraiser.

She said: “The hospital needs as much support as it can possibly get in order to maintain its high standards of care and to buy state of the art equipment.

“The things that go on at the children’s hospital are absolutely incredible and, for many of the patients and the families that rely on it, the service is absolutely life-altering.

“Having a chronically sick child is very frightening. It changes the way you live your life and your outlook completely, and that’s why I volunteer.”

Queen Mary’s Hospital for Children is currently celebrating its centenary year.

If you would like to donate money to the cause, sponsor any of the upcoming events, receive more information or simply get involved with volunteering, call senior paediatric nurse Sue Collis on 020 8296 2458.

A summer fete celebrating the 100th year of the hospital is set to take place at Sutton Arena on Saturday, August 22.