THE parents of a little girl ‘locked’ inside her own body have described how she is defying the odds to survive after doctors recently told them to ‘prepare for the worst’.

Little Aasiya Usman, who is four, was born with hypotonia, known as ‘floppy baby syndrome’ meaning she has no mobility or communication skills.

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Most babies born with the rare disorder die before the age of one.

Aasiya lives with her parents Sajid and Sabina, her brother Adam, 13 and sister Aisha, seven in Little Harwood, Blackburn.

The youngster also suffers from a progressive neurodegeneration, a loss of brain function, is partially sighted and suffers from severe epilepsy.

Sajid, 39, who works in sales for Altham based Exertis, said when Aasiya developed a serious chest infection in November, doctors said they should prepare for the worst.

He said: “She was very ill, in hospital for weeks and we thought it would be the end.

“But our daughter, despite her condition, is a fighter.

“She was also supported by the love and prayers of all her family, our friends and our local community. Somehow she managed to get over the chest infection but her condition could get worse at any time.”

The family is being supported by children’s hospice Derian House, who assist with Aasiya’s care.

Sajid has been so moved by their support he is running the Great Manchester run on Sunday and has already raised £1,500 for the hospice.

He said: “We are helped immensely by Derian House who provide families like ours with respite care for children with life limiting conditions.

“They can also accommodate the family in flats located on site. They are an amazing group of people doing amazing things for children, many of whom have precious little time in this world.

“I have never done any real running so this represents a massive challenge for me.”

To support Sajid go to www.justgiving.com/Sajid-Usman.