On 2nd September 2016, just after her second day back in school, Aoife was at a neighbour's house, bouncing on a trampoline, when she had a seizure.

She did not come round from it and an ambulance was called. We were taken to the local children's hospital which was thankfully only 10 minutes away from our house.

Aoife was rushed into the resuscitation room and we were not allowed near her for at least two hours until they had stabilised her.

She was brought into the intensive care unit where we then spent the night, watching her deteriorate.

We thought the next morning that she could have the breathing tube taken out - but when they did she had a seizure.

Eventually the only thing to stop her seizing was to put her into an induced coma. I remember that this was on a Friday.

The following week was spent doing MRI scans, brain scans, a spinal tap and hundreds of blood tests for bacterial and viral infections. This was done because they knew there was a swelling of the brain but they did not know why.

Every time the anaesthetic was taken off, she would seize. She had a continual EEG on her so they could see the activity of the brain. Thankfully, the doctors had immediately started all sorts of antibiotics and anti-viral drugs but nothing was changing.

Aoife and her brothers

On Friday 9th September, her neurologist spoke to us and said he thought it may be a condition called Hashimoto's encephalitis as one of the blood tests had shown extremely high antibodies.

He suggested five days of high doses of steroids and blood plasma exchange. This would clean out the antibodies, and according to all his research and phone calls to the Mayo Clinic and other institutions, steroid treatment was the way to go.

Five days in and there was no change so we began a second five-day treatment.

Then - on day nine - there was a change!

On day 10, the anaesthetic was lowered slowly over a 12 hour period and Aoife had no seizures.

On day 11, her breathing tube was taken out which was nerve-wracking. My daughter is nothing if not a fighter, and she did start to breathe on her own

We then started the journey of slowly weaning Aoife off all medications and watching her twitch, kick and lash out.

We were moved to a normal ward on day 24, but Aoife couldn't walk, talk or even move. She would just kick, grunt, scream and she always looked scared, so scared.

Someone had to be beside her all the time. Eventually, Aoife started to sit up and would try to talk. By week four or five, she started to talk and eventually walk again, although a little off balance.

She still had to have me, her dad or a carer near her at all times as she would do some strange things, such as try to escape from hospital! Aoife would have the odd seizure too so she had intravenous immunoglobulin  as well.

Twelve long weeks after this nightmare, Aoife came home but she was a very different girl.

She has been left with epilepsy and an underactive thyroid, but it was the change in personality and loss of many cognitive skills that were most obvious.

Aoife and her mum, Louise

Two years on, and Aoife is still in recovery.

She is progressing very well. She receives rituximab every six months to stop her immune system attacking her brain, and she is on medication for epilepsy.

Our hope is to wean them down very slowly over the course of three to five years. We are in the process of assessing her cognitive skills which is taking a while as she has had a few ups and downs on her journey.

But, overall, she is doing very well.

The reason why I wanted to share Aoife’s story is because when people see her, they see a healthy 14-year-old girl.

They don't see the hidden problems: the exhaustion, the change and loss of her personality, the loss of so many skills that once came to her so easily. And then, added to this, she is a young hormonal teenager on a lot of medication.

Aoife is very aware of the skills she has lost. It is like losing a part of your body - but no one else sees that! 

She is a wonderful young lady full of resilience and pure determination. She has two younger brothers, Eoghan and Ronan, who have travelled this long painful journey with her but they are so proud of their big sister and I am so proud of them all. They are amazing.

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