Nottingham girl who 'defied odds' is one of only 14 worldwide suffering from rare genetic condition

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"She has defied the odds so far, so why stop now?"

A young Nottingham girl is living with a genetic condition so rare she is only one of 14 who has it worldwide. Laya Osman, seven, who lives in Bilborough and Beechdale , was diagnosed with a mutation of the UFSP2 gene at the age of four months when she began to have seizures.

Mum Fareda Osman, 30, who works part time as a special education needs assistant, said: "I was told that my daughter would never eat or drink orally and that eventually she would lose all capacity to talk, walk or would never have a normal development, and to expect a very short life expectancy for Laya.

"Against all odds, Laya improved after four months, and she started eating and drinking a little, although she is largely PEG fed (a feeding tube inser