Blackburn parents thank community for rallying round (From Lancashire Telegraph)

Blackburn parents thank community for rallying round

5:00pm Sunday 17th June 2012 in Blackburn

THE parents of a baby locked inside her own body have thanked their community for raising money to help families like theirs.

Heartbroken parents Sajid and Sabina Usman say their 19-month-old daughter, Aasiya, is unable to turn her head, sit up, or even smile at them.

Aasiya was born with hypotonia, known as ‘floppy baby syndrome’ - meaning she was born totally paralysed.

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

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

Residents of Brooklands held a Jubilee street party and collected money for national charity REACT, which provides funding and specialist equipment for terminally ill children.

Money is still coming in, but the total is believed to be around £1,000.

Sajid, of Brooklands Terrace, Blackburn, said the money will help families like his.

He said: “Aasiya is not able to sit up or walk.

“When she was born she looked like a normal baby. As the week’s progressed we noticed that she wasn’t kicking her legs or turning her head.

“The doctors just told us that all babies progress at different rates and see how she goes.

“As the second and third month passed we knew there was something wrong.

“We have large families and know children of a similar age. It’s heartbreaking to know our daughter will never be able to play with them.

Sajid, who has two other children, said his little girl has no control over her movements. She can’t reach for any toys, respond if you speak to her, or smile in recognition.

He said: “We know it is a life-limiting illness, but we are not sure how it will effect her life expectancy.

“There’s no cure to make her better, and there’re no medication to make her brain spark back to life. It’s just a case of making her as comfortable as possible.”

The youngster requires around the clock care from mum Sabina and she is fed her milk and medication through a peg in her stomach.

Sajid said: “She was being fed through a tube in her nose but she kept getting chest infections and required lots of hospital treatment.

“Some days you can tell she is well because she has colour in her face, and other days her lips are pale.

“We are hoping that the degeneration will plateau and any skill she might pick up, however little, is a milestone.”

The family have applied to REACT charity for help to purchase a specialist buggy, which will cost over £3,000.

Sajid said: “The buggy will help her to sit up and support her. We want to take her out and create memories as a family.”

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