Ben's battle

REPORTER:Rodney Lohse

Ben Mavropolous is just two-years-old and about to undergo a risky 15 hour brain operation to give him some hope of a normal life. His story has touched an entire town.

Ben was born a beautiful healthy baby and a welcome addition to John and Tarni's perfect young family.

"He was gorgeous, he was angelic looking. He was completely normal and had no problems at birth."

John and Tami watched their baby grow and develop just like older sister Ruby had before him, until he was five months old.

"We noticed his eyes roll back in his head, and arms and legs jerk out. It happened once and then a couple of days later," said Tarni.

A series of visits to doctors and specialists and Ben was diagnosed with uncontrolled infantile spasms, a form of epilepsy.

Ben is plagued by 100 to 500 severe seizures a day. Due to the seizures Ben is non-verbal, not walking or crawling, can't stand, feed him self, play or use his hands to hold a cup and spoon.

"Although we were completely distraught over it, we thought there would be a light at the end of the tunnel and he'd be fine. That was two years ago," said Tarni.

Ever since, Ben has been prescribed a cocktail of epilepsy drugs to try and hold off the seizures. They've tried a special diet, physiotherapy and endless other remedies, but nothing has worked.

Neurologist Dr Mark Mackay says while it is not known what is causing Ben's seizures, they have discovered that the seizures originate from the left side of his brain.

The left side is effectively sending out uncontrolled electrical impulses throughout his brain, and this is stopping or hindering the normal brainwave patterns which control speech and movement.

"It's why children with this form of epilepsy often have problems with development," explained Dr Mackay.

For little Ben he hasn't progressed past the development of a 5-month-old.

Doctors say his best option 15 hour brain surgery that disconnects the entire left side of his brain.

"It is probably the biggest decision I've had to make in my life. At first we didn't fully understand what the surgery entailed until we sat down with all the doctors," said John.

By separating the left side of the brain completely from the right, it is hoped that the erratic electric impulses will stop travelling to the right hemsiphere, allowing it to develop normally.

And most importantly giving Ben some hope of a normal life.

"He may learn to communicate, but he won't be verbal because the left side controls speech, but he may learn to communciate with his hands. And he will likely lose the use of his right side," said Tarni.

"It will take a huge toll on his little body being under anaesthetic for such a long time."

Even if the operation is a success, Ben will need care for the rest of his life, including specialist equipment and rehabilitation.

"I'll make it my life mission to make sure that he does nothing is going to stop him from getting the quality of life he deserves," said John.

It was going to be a lonely road for the family having to come up with money for specialist equipment for Ben out of their pockets.

Until the small community where John works as a police officer, decided to get behind the family.

"I suppose it's the camaraderie that we all have as members. We all look after one another," said John.

John has only worked in the Victorian country town of Gisbourne for one year. He has known fellow senior constable Danny Brown the same amount of time.

"You can just see it in his eyes, so anything to give a hand," said Danny.

John's colleagues and members of the Gisborne community are now trying to raise funds to help with expenses.

They have organised a trivia and auction night to be held next month in the country town.

"We want it to go towards a vehicle if Ben is in a wheelchair or is dependent on being moved around John and Tami won't have any problems there."

And while most of the community hasn't met the Mavropolous family it only takes one meeting to realise this is a very special family.

Despite the setbacks and the hardship they have endured they are thankful that Ben is in their lives.

"I don't think we'd be the family that we are had he not been around.

"And while I wouldn't wish this on anyone, I think it's given us a very special understanding of what it is like just to be able to raise your kids."

To help Ben :

Please make a donation to the Bendigo Bank:
BSB: 633 000
Account Number: 12893 5186.
In the name of 'Benefit for Ben'.