'Laya defied all the odds, now anything we can do to improve her life is better than not trying'

FUND-RAISING APPEAL FOR GIRL WITH ULTRA-RARE CONDITION

- By OSCAR FISHER

A YOUNGSTER 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 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 (with a feeding tube inserted into the stomach through the skin).