Tilly was part of a gene therapy clinical trial at Sheffield Children's Hospital in 2024 to try to help reduce seizures connected to her condition.
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Jimmy Kimmel wasn't a fan of Donald Trump's State of the Union address, but it sounds as though plenty of right-wing politicians and talking heads were.
"A lot of things have to be scrapped completely and rebuilt from the ground up," she tells the BBC. "In fact, if political constraints did not matter, the best thing to do would be to scrap PDVSA, but that isn't going to happen.
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