Michael and Tegan’s story – Written by their mother, Kim.

Our story stated in 1997. I’m sure that many of you can understand how excited we were when my husband was sent to a conference in Perth the other side of the country and I was allowed to join him with a weeks holiday at the end on our own, we were heading north and to Geraldton when my mother told me that Michael had got a little worse but not to worry. My mother travelled interstate to mind Michael and Tegan. The morning we left I noticed Michael had a runny nose and looked as though he was coming down with something.  Over the next few days not much changed and on the Saturday mum took them to the movies. Michael vomited when they got home. Mum took him to the doctor who said that if he gets any worse take him to the hospital. He didn’t get better so mum took him in. We had already started to make plans to return. The hospital admitted him because of his fever. They did a lumber puncture, it was clear. The neurologist was convinced that there was no need for us to return. We arrived back as soon as we could. Michael was saying some very strange things and we were told that it’s likely due to his high temperature but that had gone 24 hours before. He didn’t know his dad and thought he had three sisters. They sent him down for a cat scan . That didn’t show anything but his condition was clearly disintegrating. He was going into a coma. He was airlifted to Randwick Children’s Hospital. They suspected post viral encephalitis. An MRI showed the damage and demyelination. Then it was three weeks in a coma, another week in ICU and four weeks in a ward.

For us it was hard to accept the changes in our lives and what the future would hold but we did face the challenges and adapt to them. Michael worked hard to get back to doing as many of the activities that he did before he got sick and more. We tried not to hold him back and as the years passed our lives returned to a relative normal.

In 2002 we had moved to Queensland and it was the school holidays, my husband drove down to see his parents with Michael and Tegan. I had started a new job so I stayed at home. Tegan had started to become a little unwell a couple of days before they left but it seemed like a cold. They stopped about halfway for the night and my husband told me that she was still sick a little worse. They arrived in Sydney and he was worried so he took her to RNS hospital. She had influenza A. As a precaution they did a lumber puncture and it was clear. My husband wanted an MRI and insisted that this resembled what happened to Michael but they didn’t think it was necessary. She was sent home and told to give her Paracetamol and fluids. My husband checked on her at midnight and asked how she felt. She shrugged and said ‘ok’. At 5 am my MIL checked on her and she had vomited on herself and was already going into a coma. She went back to RNS and was transferred to Randwick. I flew down and she was in intensive care. The MRI looked identical to Michael’s. She had demyelination and the pattern was exactly the same. This couldn’t be a coincidence. It looked like Japanese encephalitis but it wasn’t. Tegan had been our healthy child. She hardly ever got sick and here she was deteriorating before us. She was 14 years old. There was no saving Tegan and our hearts were broken. They did a partial autopsy on her we all hoped that it might show answers. If not straight away but in the future.

Two years later I got a call from Tegan’s neurologist who had become aware of a case in America that sounded very similar to ours. We sent not only Tegan’s DNA but Michael’s parents and grandparents to Dr Neilson. There was a connection. My husband and his father carried the gene and both of our children. No one else in the family had ever had an episode. Our children were the first.

When Sienna got sick it was our worst nightmare being relived again. My children  were 12 and 14 she was 2. Sienna is making a wonderful recovery but you check for milestones a little more closely and worry as soon as you hear the word flu.

We didn’t know that so many other families were going through this as well and what I’ve learned is that time is the most impotent thing at the beginning.

Michael was in hospital and his condition worsened in front of medical staff. Tegan lost that important time. Vanessa and Michael had the knowledge and the hospital had a clinical path to treat Sienna. She was rushed straight in and the doctors had a starting point. I’m sure that quick response was critical to her recovery. With our children they weren’t quite sure what they were dealing with.

When this happened to us I looked at everything I had ever done and blamed my myself reasoning that there must have been something that I had control over and had failed as a mother. I don’t think I did. I know now that It wasn’t it is a gene and that I had no control and Michael and Vanessa have no control over that. I’d love to see that gene being able to be turned off.

Michael’s story – Written from his own POV

 In winter 1997 I was 12 years old. I spent roughly a week sick with influenza A. Over the week I progressively got worse, experiencing fevers and vomiting. I don’t have any memory of the next few weeks. I’m told I was eventually admitted to a local hospital where the doctors were unable to help. I was then airlifted to another Hospital and placed into an induced coma and intubated.

When I recovered I had to undergo extensive physiotherapy and was an inpatient for the next few months. Speech was slow but otherwise ok for the most part, but I had to learn to walk again and had almost no short term memory. My physical recovery was almost 100%; I have very tight calf muscles which need regular stretching, slight pigeon toe, very slight speech issues, and deteriorated eyesight. Most issues are minor, all of which are exacerbated when I’m stressed or tired. The biggest ongoing effect has been my short term memory. When hospitalised, I struggled to remember things from only an hour earlier. 

As I improved, I would still have trouble grasping new concepts (especially in maths and science) and needed a tutor to help with schooling. I was always naturally adept at schoolwork beforehand and found for the first time that I needed to put a lot of effort into studying or I simply wouldn’t grasp or retain new information. 

I graduated high school with reasonable results and, after several years in different roles, eventually returned to studies in higher education. I have now graduated with a law degree and am working as a child protection lawyer. I still struggle with new concepts, become quite tired and lacking in concentration easily when overworked, and have noticeable memory issues.  I use calendars, alarms, to do lists, and personal reminders extensively to keep on top of things. It’s a constant struggle, but I have found a way to overcome these issues (for the most part) that works for me.

Tegan’s story – Written from Michael’s POV

In 2002, my sister was 14 years old (I was 17) when she came down with a case of influenza A. My parents were wary of this given my history, but at the time encephalitis was such a rare condition and very little was known about it. The odds of contracting such a thing twice was thought to be impossible, and there was no link to anything genetic. My recovery had been thought of as nothing short of miraculous.

My sister, Tegan, also began to deteriorate in the same way. My father and I were interstate with Tegan, my mother had stayed at home. My father was extremely concerned and tried to have her hospitalised and requested an MRI. She was placed under observation but soon discharged, with her condition dismissed as a flu.

Over the next day she became much worse, with fevers, vomiting, and varying degrees of lucidity, occasionally speaking complete nonsense. In the early hours of the morning she became much worse and was eventually taken back to the same hospital by ambulance. This time they took the matter more seriously and consulted with the neurologists that treated me at the Children’s Hospital.

She was eventually transported there, admitted to ICU, intubated, and placed in an induced coma from which she never woke. Doctors began treating her with steroids, given its success with me, and gave her a lumber puncture. They had also drilled into her skull to relieve the pressure from the swelling of her brain and placed her on life support. These were the same treatments used on me, as I’m told that my experience was initially similar. The difference is that my body reacted to these methods reasonably quickly. Tegan didn’t.

Within 48 hours she was showing no sign of improvement whatsoever, and further testing showed that several organs had begun to fail and she was almost completely brain dead. We were told very frankly that there was practically no chance of recovery, and my parents agreed to turn off the life support. Within a few minutes all vital signs had gone – there was no heartbeat or brain activity.

We have since been told that a lot more is known about the condition and that it is genetic. To this day I am wary of viruses and am vigilant with flu vaccinations. I have contracted flu, covid, and shingles with no ANE recurrence, but I do my best to avoid heavy crowds, work from home as much as I can, and through doctors overseeing care of my daughter (who also carries the gene) I am learning of additional protections (such as tamiflu).