Matilda Kobier

Two years ago nearly to the week, Matilda was struck down with HSV encephalitis. It looks like flu but kills most of its victims if not treated within 72 hours. Tilly spent weeks in intensive care and then months in the Lady Cilento Children’s hospital in Brisbane recovering.

She has been learning to live with an acquired brain injury which has significantly impaired her cognitive function and left her with epilepsy. Tilly literally lost a large part of her brain that year and about 4 years of learning. Her family have worked tirelessly with Tilly to build new ways of understanding the world and to give her new skills. Rebooting the hard drive is not an option because that part of her brain simply doesn’t exist anymore.

In April 2017 Tilly's seizures took on a whole new dimensions of bad and she has to return to hospital, nearly 2 years to the date of her first hospitalisation (where she will once again celebrate her birthday).

Tilly’s brain is literally at war with itself. When she was admitted they found the seizure activity has moved from the original damage zone out and across her entire brain. The swelling caused by the seizures has led to even more loss of cognitive function, more seizures and now her own body going into defence mode trying to kill off the affected areas. Neurologists are trying to stop the seizures and the onset of further damage by using incredibly strong medication (that leaves Tilly totally depleted) She required very strong IV steroids and immunotherapy.

As the testing continued the neurologists found that Tilly had contracted a new devastating and potentially life threatening form of the virus - anti NMDA receptor encephalitis. In this form the Matilda's own antibodies are attacking her already damaged brain, causing severe behavioural alterations. Tilly now needs 1:1 care 24/7. The current treatment included weekly IV infusions that take about 6 hours, that will kill of her B cells. Her team hope that this will hold back the antibody activity but it will also leave her expose to infection. She is stuck in that awful place where both the disease and treatment are awful and the chances of success are unknown.


Our lovely Matilda is literally back where she started 2 years ago or possibly worse. Her family are being incredibly resilient but they need resources and support which none of their immediate family can provide as they live too far away.

Tillys family are depleting all of their resources, financially, emotionally and timewise on Tilly’s care and they need help. Increasingly they will need even more help for medication, hospitalisation, therapy and respite.

MATILDA’S STORY

HOW IT ALL BEGAN

Heaps of kids in our neighborhood had been crook. Our eldest had been at home with a ‘bug’ for a whole week, which had never happened in his seven years at school. Matilda had complained of a headache and thrown up once. She was cranky and agitated but we had cancelled her ninth birthday party, so that seemed reasonable. One morning a few days into her illness, Reuben commented that he couldn’t understand what she was saying, and neither could I.

After that it all happened so quickly. Matilda’s eyes reflected fear and her mouth was locked in a single sound ‘ah-ah-ah’ as she tried to speak. Something was seriously wrong. We drove quickly to Byron Bay Hospital emergency department. We now know that what I thought were just tummy bug symptoms, were in fact neurological agitation as the HSV Encephalitis started to take hold and attack her brain.

Matilda was rapidly transferred by ambulance to The Tweed Hospital. The swift action of the medical team there in starting her on anti-viral medication, almost as soon as she arrived, probably saved her life and without doubt has led to a much better prognosis for her. An MRI, lumbar puncture rapidly followed. There was loads happening and she appeared to be deteriorating. Over that short period of time she already was losing her ability to answer orientation questions Where are you? What is your name? How old are you? Each garbled answer made us feel waves of nausea.

That night she tossed and turned. In the early hours of the next morning she had a massive seizure. The medical emergency team (MET) raced to her aid - keeping her alive. We found out later that her seizure lasted an hour. It was a long seizure. Her temperature was too high. It felt like it had taken everything they had to control the seizure and the fear was not just mine.

In the early hours of that morning Matilda was transferred to the Lady Cilento Children’s Hospital in Brisbane.

This is how Matilda’s journey with HSV Encephalitis began. Usually it develops over a period of days but, like any other viral infection, depending, for example, upon the immunity of the patient, the disease may take a variable course. Typically it begins with "flu-like" symptoms followed by neurological deterioration, which may include personality and behavioural changes, and perhaps seizures and dysphasia (difficulties in communication). If untreated, it may lead to progressive impairment of consciousness, coma and death. It is an extremely rare illness.

WHERE ARE WE NOW?

Matilda has been in hospital for 13 weeks. She was slow to respond to the anti-viral medication and had further seizure activity. She spent longer than expected in the paediatric intensive care unit (PICU).

Matilda has almost completed her first round of rehabilitation and will soon return home. She attends the small hospital school for 2 hours a day and has a steady diet of speech, occupational and physical therapies. The damage to her temporal lobe has left her with severe language issues and almost none of her previous grade 3 literacy, numeracy or academic skills. In real terms she now has a similar academic level to when she started school in kindergarten. As her world begins to open up, there is greater frustration at not being able to get her message across and our ability to guess her meaning is reducing.

HOW CAN YOU HELP?

With HSV Encephalitis we have been the lucky ones. Matilda shines through with all her creativity, empathy, humor and determination. She has lost a great deal but not her essence. We will need all of our community’s love and help to enable her to grow into the very best version of herself that she can be. We will not let the image on her MRI hold us down. We will not return to full-time work but work to support her creating a bespoke education – we have ‘grand designs’ for a hand-made, one off program of education, therapy and tutoring. This journey will be a long and arduous one at times but worth everything that we have to throw at it. We do not want Matilda to gaze at life from the sidelines. We aim for her to thrive.

The future is still pretty uncertain for Matilda but we do know that at the very least she will need a full range of therapy programs, additional educational tutoring, assistive technology with specialized software, together with lashings of love and support of her family, friends and her community.