I come from Australia. A country famous for it's bikini clad meter maids, and Steve Irwin - "The Crocodile Man."

My family consists of Steve (not the crocodile man!), Emma our three and a half year old tornado daughter and Luke, my 20 month old son with TM.

I am an Air Traffic Controller, and I am used to having some control over things and making them happen. But in Luke's situation, I had absolutely no control over anything.

This is Luke's story, and nothing could have prepared us for the turbulent path that our lives have followed over the last 15 months.

On the sixth of April 2000, Luke had his scheduled DTP, diphtheria, tetanus, and whooping cough immunization. On the 19th of April 2000 Luke had his third and final Hepatitis B immunization. The very next day we all flew to New Zealand after being in Australia on a three-year posting with the Royal New Zealand Air Force. We were to return for two weeks to organize our affairs before moving the family to Australia, where Steve was to start a new job.

Luke was five and a half months old.

The first time I was aware that something was not quite right with Luke was on the 29th of April. Luke had a weak cry, he was unsettled and appeared tired and a little floppy - as all children are at times.

Luke had a bad night's sleep, waking and crying, but not moving around very much. I fed him and comforted him and he fell asleep next to me. Early the next morning, he hadn't improved, so we took him straight to see a doctor. The doctor couldn't diagnoses what was wrong, but was unhappy (as I was) with his weakness.

Luke was admitted to Palmerston North Hospital directly from the doctor's surgery on that day (30th April). The hospital was a small hospital, servicing a city of 40,000 people.

The doctors thought he may have either encephalitis or meningitis, and Luke was commenced on a course of antibiotics. A spinal tap was also preformed. The doctors were still unable to come up with a diagnosis.

Luke's breathing appeared laboured and I mentioned this to the nurses. Finally, I got to see a pediatrician who reassured me this was a normal breathing pattern for a baby. I was concerned.

Later that evening Luke started to salivate and went in to respiratory failure. His eyes were fixed straight ahead and his body was completely floppy. Luke was resuscitated and then went into respiratory failure another two times.

The emergency doctor was out of his depth. He was hesitating and was unsure whether to incubate Luke, as he had no pediatric training. When the pediatrician arrived, he incubated Luke and gave Luke some drug to relax his jaw, as he was also having a seizure.

Somewhere in the middle of all of the chaos, I managed to call Steve who joined me. Together we stood in disbelief and shock, wondering what was happening to Luke.

On the first of May, Luke was transferred, by aircraft, to PICU, a cute name for a very serious place - The Pediatric Intensive Care Unit of Starship Hospital in Auckland. This was the biggest and most capable hospital in New Zealand. We felt Luke was in good hands.

On the second of May, the doctors felt Luke was stable enough to be taken off the ventilator. He was abdominally breathing - but he was breathing!

He was completely paralysed from the neck down and we still didn't have a diagnosis. Luke appeared to be in pain and was given pain relief. I expressed milk and Luke was fed through a tube, as feeding was too exhausting for him.

The doctors talked to Steve and I about Luke's quality of life. They expected him to fatigue and have to go back on the ventilator. They discussed turning the ventilator off. This was without a doubt the worst day of our lives.

We still had not had a definite diagnosis, but Gillian-Barre and TM were hot contenders. A CT scan revealed nothing. Luke was given a course of Methyl Prednisone.

On the fourth of May, Luke had an MRI scan. This was five days after the onset of Luke's illness. We were expecting the scan results to reveal TM - by now my husband was an expert having read all the medical reference books he could get his hands on. We were advised the MRI scan showed a lesion from C2 to C7 and a long syrinx. It was almost certainly a tumour and Luke would have two weeks to live. Steve and I had had better days.

Over the next few days, Luke remained paralysed - reaching out to the world only with his tongue.

On the 11th of May, Luke had a second MRI scan. This showed a reduction in the size of the lesion, a significant reduction of 50%. It was now thought by the doctors that TM was more likely than a tumour. We felt so blessed to still have Luke, and there was the occasional small flicker of a finger. The chance of life was so much better than no life at all.

And how is Luke now, 15 months later?

Luke is a very happy boy. He is a quadriplegic. He has limited movement of his arms and hands. Enough now that he can just feed himself by balancing pieces of food on his thumb. He has returning sensation in his lower limbs. He still abdominal breathes. There is some small independent and conscious movement in his legs.

While Luke is faced with more challenges than most people, we focus on what Luke can do - not on what he can't. We see a bright, independent and satisfying future for both of our children, and as a family, we will ensure that happens.

I came to this symposium believing I knew what TM was - I leave realizing I know nothing. Luke's rehabilitation will be greatly improved by what I have learned here.

I hope to increase the awareness of TM and the importance of early intervention with steroids and early diagnosis with MRI scans.

For whatever reason it happened, and I'm not sure why, what I do know is that we are on a different flightpath to the one I'd filed. This doesn't mean a worse flight - just a different one, and the destination might even be better than the one we'd originally planned, who knows?

Just as Luke has adapted, we also have made adjustments, got used to the changes, and got on with life. What else is there?

When Luke was in PICU and it looked likely he would die, my husband wrote a list of wishes for Luke, and I'd like to share them with you now:

When it was just life or death, nothing more, this is what I wished for Luke.

I must always remember this.

Things I wish for my son:

To feel the warmth of sunlight on your face.

To reach out, and feel the accomplishment of grasping.

To marvel at the mystery of life.

To sense the vastness of the universe and the smallness of one's self.

To give love. To feel love.

To know peace and comfort.

To wonder. To be in absolute awe.

To feel rapture/pure joy.

To know faith.

To simply dream.

To see the first rays of the morning light.

To sense the uplifting spirit of music/song.

To feel contentment and happiness.

To create.

To feel the first sharp intake of breathe after diving into fresh cold water. The invigorating sense of being alive.

At the end of it all, to have been a good person.