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Updated 14 March 2018

Rare brain condition forces 11-year-old girl to make heartbreaking decision

Shania Lawrence-Rousseau was faced with a decision almost too tough for such a young person to have to make.

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At just 11 years old, she had to decide whether to undergo a drastic operation which would leave the left half of her body paralyzed The Birmingham Mail reports.

Shania, from Telford in England, suffers from a rare disease called Rasmussen’s syndrome. Only 1.8 million people worldwide suffer from it.

The syndrome causes chronic inflammation in one half of the brain. That brain hemisphere then swells, leading to seizures. Shania has more than 30 seizures a day.

“Shania’s first seizure was in January 2016, just before her 10th birthday,” her mom, Tilly, said.

“I remember it like it was yesterday, it was so frightening. Up until then, she’d been a normal, healthy child. This came completely out of the blue.”

Because Rasmussen’s is so rare, it took 18 months before Shania was diagnosed, The Mirror reports.

Tough decision 

Doctors have told the family there is one way to treat it – but it will be one of the most difficult decisions they’ll ever make.

Shania’s parents had to decide between her continuing to get upwards of 30 seizures a day – which could eventually kill her – or doctors would isolate the right hemisphere of her brain. But that would mean the left half of her body would be completely paralyzed for the rest of her life.

She would be blind in her left eye and she wouldn’t be able to walk or use her left hand. But without the operation, her condition might only worsen.

“It was such a hard decision to make, but it had to be done,” Tilly says. “She [Shania] said she couldn’t do it.

“I wanted to help her and I couldn’t think what to do. We’re fighters and I wanted to show her she wasn’t on her own, and that she had lots of support. So I set up a Facebook page called Shania’s Rasmussen Fight.

“She received hundreds of messages of support – and even a letter from America. She saw all the messages, she said, ‘I couldn’t do it but now I will.’ ”

No more seizures 

Tilly knows her daughter loves Disneyland, so before the operation they took her on a care-free day trip to give her a last chance to just be a regular kid.

The operation was done on 21 February and was successful – Shania’s hasn’t had another seizure since. She’s undergoing intense physical therapy to learn to walk again, according to The Mirror.

“She can’t stand or walk on her own yet, she has to be hoisted up and out of bed,” Tilly says.

“They took away a piece of my brain and they’re testing it now because it’s a rare condition,” Shania says. “Hopefully, what they find will help other people with Rasmussen.”

Image credit: Facebook (@Shania's Rasmussen fight)

 
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