Toddler with rare disease to undergo surgery that will disconnect one side of brain from the other permanently

A three-year-old British girl who suffers up to 15 seizures a day will undergo a radical operation where surgeons will disconnect one side of her brain from the other. Florence Penn suffers from cortical dysplasia, a rare disease that occurs when the top layer of the brain doesn’t develop properly and causes someone to experience epileptic fits, sometimes on a regular basis.

Florence’s illness first came to light when she “slumped down” in her chair before becoming “unresponsive,” according to her parents, Frazer and Rebecca, both 32. And later, when she started displaying “out of control” seizures, doctors diagnosed her with the disease.

But in July, surgeons will perform a 10-hour hemispherectomy on Florence. The procedure is intended to stop the damaged side of her brain from sending disruptive signals to other.

Frazer says he was originally against the operation, which will result in Florence losing mobility on the right side of her body. However, now he believes it may be the only way to cure her.

“My wife and I are care workers, so we are used to seeing people have seizures, but when it is your own little girl it destroys you,” he says in a statement, per South West News Service. “We don’t want our girl to go through this and we hope she does not hate us for it, but we know deep down this is the best thing to do for her.”

Florence Penn
Florence Penn with her parents, Frazer and Rebecca. (Credit: SWNS)

Frazer, a care home maintenance worker from Essex, England says he and his wife first noticed Florence’s initial symptoms in July 2019, when she was six months old. “She just kept staring into nothing, and she’d all of a sudden slump down in her walker and stuff and become unresponsive,” he recalls. “We noticed this happen a few times, and then we thought: ‘We better go and get her checked’. Nothing else happened that day, and then in the evening, all of a sudden, she started with the seizures quite badly.

“After that, for a good few months, it was quite out of control, until they started her on medication, and then it slowly got a bit better,” he continues. “She suffered 15 seizures a day when it was at its worst.”

Florence was initially cared for by the epilepsy team at Colchester General Hospital in Essex. Frazer says doctors had first trialed her on a few different types of medication, but they hadn’t worked – and had even led to her experiencing allergic reactions.

“She had a few trips to hospital where she had to be sedated, it had got that bad, to try and give her body a rest,” he says.

Florence then went for some check-ups at Great Ormond Street hospital, where doctors recognized that she had cortical dysplasia.

“She was about two years old when she was diagnosed with cortical dysplasia. She had become seizure-free for about three months, but then we were referred to Great Ormond Street, where we had a video telemetry course,” her father explains. “They monitored her brain activity for 24 hours a day, for six days, and they also had MRIs done there as well. I think that was about the fourth MRI she’d had, and then they discovered she had three separate malformations on the left side of her brain.”

Florence Penn
Florence Penn. (Credit: SWNS)

At the time, doctors had told Frazer and Rebecca that the only treatment option was surgery, and they later agreed she should have the operation. Florence is due to go under the knife on July 7, which Frazer hopes will give her the best quality of life possible moving forward.

She will spend the rest of her life functioning on only one side of her brain after her operation.

“It’s a permanent thing – they’ll disconnect all the nerves between the two sides,” says Frazer. “You don’t wish any illness at all on your child, but it’s completely out of control, out of your hands. There’s nothing you can do about it.

“They recommended that the younger she has it the better as children have much better neuroplasticity and the brain can create new pathways to learn what the other hemisphere originally controlled,” he continues. “This will also be improved by having intense physical therapy as well. Florence has no clue what is coming her way, but hopefully she will bounce right back and have a better quality of life.”

Article by South West News Service writers George King & Douglas Whitbread

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About the Author

Steve Fink

Steve Fink is the Editor-in-Chief of BrainTomorrow.com, GutNews.com and StudyFinds.com. He is formerly the Vice President of News Engagement for CBS Television Stations’ websites, and spent 20 years with CBS.

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