Parents Emily and Mark Wolfenden donate kidney's to their boys afflicted by rare genetic condition

Parents Mark and Emily Wolfenden with their children 14-month-old Ralphael and teenager Sebastian. Picture: Martin Reddy

THE Wolfenden family share their lives, their love - and their kidneys.

Siblings Sebastian and Raphael have been afflicted by a rare genetic condition where the kidneys leak all proteins, leading to renal failure. By next year, parents Emily and Mark will have saved both boys' lives by donating each of them a kidney. They call themselves the "one kidney family". Mrs Wolfenden said they have had three boys born with congenital nephrotic syndrome - Finnish type, which affects nutrition, growth and development. "If you imagine the kidneys are like a teabag, they have the teabag without the filter," she said. "They might retain 5 or 10 per cent of protein, but they lose most of it through their kidneys."

Sebastian was diagnosed at five weeks, when the couple were living in London. "He was waking up with one puffy eye when he was about two weeks old, so I took him to the GP and she said it was probably the washing powder." Then his stomach started to get larger and, at five weeks, he started having fits. When Sebastian was three, he received a transplant of one of his father's kidneys. Mr Wolfenden said his decision to donate was instant. "No question, any dad would do the same," he said. Sebastian's immune system was compromised, so the family decided to return to Australia for the warmer weather and to be closer to family and friends.

Next month, Sebastian will celebrate 10 years since his kidney transplant. A student at St Patrick's school in Mentone, he has to drink lots of water, take medication and avoid contact sports, but otherwise he lives a normal life. "I've got some cool scars," he said. His mother added: "He has had many battles on the health front, and he has always faced them with such courage, bravery and determination." In 2003 the Wolfendens had another baby boy, Augustine, who sadly died from the same condition, at just nine days old. Raphael was born 14 months ago with the condition.

In a few weeks he will have an operation to remove one kidney and then get a transplant within the next year. This time, the donor will be his mum. "Sharing kidneys is what we do," Mrs Wolfenden said. She said it had been extremely difficult to see all three children suffer the same life-threatening condition. But the family had been united by their suffering and love. "We are unlucky to have had three in a row, but we wouldn't swap it for anything," she said. "Every life is a gift." "We have been very blessed over the years to have had wonderful doctors and nurses take care of our boys, and we want to thank them."

What is Finnish congenital nephrotic syndrome?

* Rare genetic disorder

* Manifests shortly after birth

* Results in infection, malnutrition and kidney failure

* Can often to lead to death by the age of five