Jess, shares the story of her daughter Ava’s experience of encephalitis. First diagnosed at just 4 months old.

In July 2024 we had returned from a family holiday. Ava, at the time, was 4 months old and we’d noticed that she had been irritable, had developed sores near her mouth (later identified as the Herpes Simplex Virus type 1) and one day suffered a 20 minute focal seizure.

An ambulance was called and we attended hospital, where she was started on an antiviral and antibiotics awaiting results from a lumbar puncture. Ava had two more short focal seizures during her stay. She had an MRI which confirmed the inflammation of her brain caused by the Herpes Simplex Virus type 1. Antivirals were administered via central line. She had 4 bleeds, also became anemic. She had a 3 week hospital stay, I stayed by her side every minute. Our little warrior continues with occupational therapy, physiotherapy, speech therapy, hearing tests and follow up appointments.

During our time we were transferred to our main hospital in the area, our care team was amazing and I have found so much confidence in our health system.

Ava was going so well, until she contracted Respiratory Syncytial Virus (RSV) in April 2025 at 13 months old. RSV is a common virus that primarily affects the respiratory tract.

I woke to a happy girl but, soon after, she fell in her cot having a 20 min generalized seizure with fever. We attended hospital via ambulance and Ava, again due to history, was started on antivirals and antibiotics while awaiting results from another lumbar puncture that diagnosed her encephalitis for the second time. My heart shattered into a million pieces, our little baby girl got so sick in the coming days. She was on 3 lots of medications for seizures as she had 6 in 24 hours, She stopped eating and was sleeping 20 hours of the day. It was terrifying. She received an NG tube, which helped her gain some energy after 4 days of sleep she started to return to herself very slowly.

General genetic testing panel returned no results, nor did immunology testing. To this day doctors say its bad luck for the recurring encephalitis.

To date Ava has been diagnosed with the acquired brain injury, has some slight right side weakness, otherwise she is going so well. She is on antivirals and anti-seizure medication twice daily. She is Anemic from blood tests and decreased diet due to back to back illnesses.

She is so strong continuing with her therapies occupational therapy, physiotherapy, speech therapy, hearing tests and follow up appointments.

 

Story published September 2025

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