A MUM made the decision to "switch off" half of her 12-year-old daughter's brain after feeling like she was being held at gunpoint.
Little Shania Taylor was diagnosed with Rasmussen’s encephalitis (RE) and the only cure was a hemispherectomy – a radical surgical procedure where the diseased half of the brain is completely disconnected.
RE is a nervous system disorder characterised by inflammation on one side of the brain.
It is incredibly rare – affecting just two out of every 10 million people.
Tilly Taylor, 39, says she felt like she was "at gunpoint" when she opted for Shania to have the operation – and she was told her daughter would never walk again.
Tragically, the youngster even told her mum that she "wished she had died on the operating table" after the procedure.
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But in the years since Shania, now 17, has proved doctors wrong and can walk while assisted with a crutch.
She is also studying for a Health and Social Care diploma – and the teenager is even called a "hero" by her mates at college.
Tilly said: "Because RE is a brain virus that attacks one side of the brain, the only cure for Shania would be to have a hemispherectomy to disconnect half her brain.
"Doctors said it would leave half her body with no physical activities – she was paralysed straight from the operation, and they said she would never walk again.
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"It was like being at gunpoint. There was no choice – you just have to do it.
"The most important thing was accepting she’d gone from being fully able to severely disabled at just 12 – it was like an emotional rollercoaster.
"The battle never ends, we still have to accept she has half a brain now and we can’t do what we used to be able to do with her.
"She said she wished she had died on the operating table when she was 12 after the surgery but we’ve come so far from that – now she’s accepted this is for life and we can do this together."
Shania said: "It is difficult at times, when it comes to certain things you can and can't do with physical limitations.
"The biggest impact I had was losing my left peripheral sight.
"I have to get used to the fact I can't see on the left and it still makes me jump when people approach from the left."
Shania first started experiencing symptoms of RE in January 2016, when she had a severe epileptic fit which lasted nearly 20 minutes.
Within a week of her first seizure, she went from experiencing no fits to having them two to three times a day.
After experiencing 10 seizures in just 24 hours, Shania was put on anti-epilepsy medication but it had no impact on the number of episodes she was experiencing.
It was feeling like being at gunpoint. There was no choice – you just have to do it.
In April 2017, she was referred to Birmingham Children’s Hospital – by which time Shania had begun to lose sensation in the left side of her body and was still experiencing daily fits.
Following a biopsy in November that year, she was finally diagnosed with RE and, in February 2018, underwent a hemispherectomy.
Shania spent three months recovering in hospital before the family had to move as their old house was now inaccessible for their daughter.
She continued to undergo physical therapy and hydrotherapy at the Children’s Trust in Surrey and incredibly has taken huge strides in recovery over recent years.
Now, the teenager is thriving at college – and Tilly says Shania uses her sharp and sarcastic sense of humour to make light of the situation.
Shania said: "We always try and find the good in a situation and we always say if we don't laugh we're going to cry so we joke as much as we can.
"When my friends describe me as a hero, it gives me a really fuzzy feeling."
Tilly added: "Because it’s drug resistant epilepsy, no matter how many or what drugs she was on the seizures would still happen.
"When we were referred to Birmingham Children’s Hospital, the virus was now attacking her brain drastically and she was fitting on a daily basis and losing senses in the left side of her body.
"When we were told she had to have surgery, I said to the doctor that whatever I have to do to make her better, I'm going to do it.
"It took her two years to learn how to walk short distances and she still can't walk long distances – she gets very tired very quickly.
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"She has no vision on her left, which is probably the hardest part for her.
"She’s at college now studying Health and Social Care; she wants to use her disability as a lesson to show people that giving up isn't an option."
What is Rasmussen’s encephalitis?
RASMUSSEN's encephalitis (RE) is a rare, chronic neurological disorder.
It is characterised by inflammation of one half of the brain, drug-resistant epilepsy and progressive neurological and cognitive deterioration.
RE is most common in children aged six or seven, but it can occur in older kids and adults.
Symptoms include:
- Seizures
- Weakness on one side of the body
- Difficulties using language
- Loss of vision in one eye
- Problems speaking
- Swallowing issues
- Mental health problems
The exact cause of RE is not known. However, there is increasing evidence of an underlying immune disorder.
There are two main forms of treatment – an anti-convulsive one and one that stops the destruction of brain cells.
Source: NIH and the Encephalitis Society
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