Her mother Jenny said: "I'd say in Tilly's life at least about 10 times I've honestly thought that she's gone, she's died, with the seizures and going on to ITU and them all saying that we can't stop it and the panic."
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"It is a proud moment to see this piece of digital history housed in the V&A where we hope it will inspire generations to come," Mohan said.
In one young couple's diary given to them for the project, Sumaira describes her partner coming home, the dinner she has cooked, the hug in the hallway, the two of them eating together at the table.