30 March 2009
It's the stuff of nightmares for every parent: imagine your child is suddenly and inexplicably struck down with a rare condition that has no known cure and no known cause.
That's what Claire and Ivo Padovan were faced with when their youngest daughter, Emilia, was diagnosed with a rare kidney disorder called Nephrotic Syndrome when she was just three years old.
The condition - which affects one in 50,000 children in Britain - means that Emilia's kidneys leak protein into her urine, resulting in swelling and an increased risk of blood clots. If left untreated Nephrotic Syndrome can lead to death.
Healthy kidneys clean the blood by filtering out excess water, salt and waste products from food. They also retain protein, which maintains the thickness of blood and its ability to draw water from the tissues. Nephrotic Syndrome damages the filtering ability of kidneys, which then allows protein to leak into the urine. A person with Nephrotic Syndrome will lose around 25 times the normal amount of protein in just 24 hours.
Emilia is now six, and after years of regular hospital treatment and constant worry, mother Clair Padovan told us what it has been like to live with a child suffering from this mysterious condition.
Mrs Padovan said: "The day we first realised that Emilia was ill was just like any other. She was playing in the playground when we noticed that she had a very swollen face and tummy. When I asked her about it, she said 'Mummy, I'm fine - I'm not poorly', but you could tell just by looking at her that she wasn't well.
"We rushed her to the paediatric A&E department of St Helier Hospital [which is part of Epsom and St. Helier University Hospitals NHS Trust] and our lives changed dramatically.
"The staff were brilliant, but obviously very concerned for Emilia from the moment we got there. In hindsight, it is clear that they knew something was very wrong with her, but at that time we still didn't fully understand the severity of the situation. It wasn't until a bit later, when the condition had been explained to us and Emilia had been given medication that we began to realise what we were in for.
"Following that first trip to A&E, we were in hospital for ten days and Emilia began a course of high dose steroids. Unfortunately, although the steroids were completely necessary, the amount that Emilia needed resulted in some very serious side-affects. Her character completely changed- it was like living with a Tasmanian devil. 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." Other side effects include painful joints, stomach tenderness and weight gain.
Only a week after Emilia's initial stay in hospital, she started to experience severe night time headaches. "One evening her headache became so screamingly painful that we had no choice but to take her back to A&E," said Mrs Padovan.
Suffers of Nephrotic Syndrome have an increased chance of developing a blood clot, so it was back to the Queen Mary's Hospital for Children for the family. 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.
Over the following months and years, Emilia had several more relapses of her Nephrotic Syndrome (periods where her kidney's spilled protein into her urine) which were triggered by minor ailments.
"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," added Mrs Padovan.
Luckily, many children diagnosed with Nephrotic Syndrome grow out of the condition, and many sufferers are left with no lasting damage to their kidneys.
Emilia is now stable and has been in remission for 22 months, but is still prone to infections, and picks up colds and illnesses very easily.
The experience has changed the lives of the Padovan family, and because of their ordeal, Clair 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 or simply get involved with volunteering, please call senior paediatric nurse, Sue Collis on 0208 296 2458.
A summer fete celebrating the 100th year of the hospital is set to take place at Sutton Arena on Saturday, 22 August 2009.
