That night I got a call at home from the doctor that he got the impression that I was not happy with the diagnosis, and asked if we would rather be referred to a paediatrician. At our appointment with the paediatrician, Nathan had another ‘episode”. It was then I discovered that Nathan was having seizures, and he was diagnosed with epilepsy. I cried all the way home.

He was put on phenobarbitone, which did control his seizures. They said he may grow out of it by the time he was two, then it became when he was three. With medication still controlling Nathan’s seizures, we decided to wean him off medication to see if in fact that he had grown out of it. He was seizure free for about eighteen months then one day when he was four, he began having seizures again. Since then Nathan’s seizures have been uncontrolled, and he has tried many different medications. In November 2004 we decided to move our family from Gladstone, to the Gold Coast, so that we could be closer to Nathan’s neurologist.

Over time Nathan’s seizures got progressively worse. In April 2005 he had a right temporal lobectomy at the Sydney Children’s hospital.

Before surgery he was having two complex partial seizures a day, his muscles would all tense up and he would fall over is standing, or off chairs if he was sitting. He salivate, sometimes vomit, his eyes would roll back, he would gulp, his eyes would water, he would lose consciousness, and need to sleep for 1-2 hours. With medication failing to control his seizures, surgery was suggested, and as any normal parents would, we found this a daunting thought.

Through our pediatrician in Rockhampton, and our neurologist in Brisbane, we were referred to a specialist in Sydney. We saw her in December 2004. She arranged for Nathan to have a series of tests, to determine if he was suitable for surgery. In Sydney, we stayed at Ronald McDonald House, in the hospital campus. The flights for Nathan, my husband and me were covered by the Gold Coast hospital as we were being treated as public patients.

In Sydney, Nathan had an MRI under general anaesthetic, a neuropsychology test, and five days in the EEG Video Telemetry Unit. He was constantly videoed and microphoned, so they could see if all the testing was consistently pointing to the right temporal lobe. Nathan also had an ictal and inter ictal SPECT scan. After all this, they deemed Nathan to be suitable to have surgery, and said he had a 70-80% chance of curing him. They thought it was either a low grade tumour, or cortical dysplasia which was causing the problems, but wouldn’t know for sure until it was removed.

As parents you have to weigh up the quality of life he has at the moment, and look into what the future may hold for him- no license and limited job prospects, as well as all the other limitations that uncontrolled epilepsy can cause, versus the risks association with the surgery. These include bleeding, stroke, and infections. We flew back to the Gold Coast after 12 days of testing, and had 8 very long weeks to wait. A long time when it’s the only thing that occupies your mind.

The day of the operation arrived, and it was horrendous. Nathan was put under general anesthetic at 7.45 am, and came back into intensive care at 4.30pm. In that time he had an MRI, the operation was set up and performed, and he then spent time in recovery. It will go down as the longest day in history for my husband and me. I can’t explain the relief you feel when you first see your child after an operation like that. The doctors immediately began waking him, and getting him to lift his arms, squeeze their fingers etc.

The operation went to plan, with no complications and the surgeon felt they had got 95-100% of the tissue- about the size of a golf ball. Nathan recovered quickly, and two days after surgery- apart from looking like he had been in a round with Mike Tyson- was relatively normal, jumping off his hospital bed and running to the toilet. He was discharged from hospital and we flew home, just six days after surgery.

Since then, he has come on in leaps and bounds. Six months later, and he has not had a seizure. He is calmer, more relaxed and for the first time in eight years, seems to feel like a normal little boy. You can reason with him, and he seems to comprehend thing better and is more aware of boundaries. He is able to concentrate for longer periods, he can sit and watch a whole movie, and he is starting to form friendships. All this was not possible before the surgery. His teacher has seen a vast improvement in him, and is amazed.

They started to slowly reduce his medication in July. We are seeing more changes in his personality since then. He is up and down, and we are looking forward to having him medication free, but it could take 12-18 months.

The team in Sydney was wonderful, and did a great job on our little boy. The specialist was like a friend, she had someone meet us at the hospital to make sure we knew where to go and where everything was. I cannot speak highly enough of everyone who was involving in making this happen for Nathan.

Nathan’s pathology tests have come back and show it was a low grade tumour he had, as well as areas of cortical dysplasia. This was one of the hardest decisions we have had to ever make, but for Nathan and his brothers Mitchell (10) and Jordan(6) my husband Grant and myself, it was the best decision we ever made.