Macy Baker has Trisomy 13, a rare and incurable chromosome disorder which caused her to be born blind and deaf, with several holes in her heart and lung problems.

Given only days to live when she was born, she is still beating the odds at 18 months old. Two months ago she survived a gastromy that doctors warned her parents could kill her.

Her mother, Katrina 27, of Sutherland Road, Corby, said: "It was said she would die in theatre but she didn't – she is proving them all wrong.

"She has not got any worse in the past six months but she has not got any better. We have been told there is nothing anyone can do for her.
We've been told her heart won't last past her second birthday so we just take every day as it comes."

The gastromy, which involves inserting a pipe into Macy's stomach, was performed so a tube through her nose which had been feeding her could be removed.

Babies born with the condition have an extra chromosome, which leads to abnormal development in the womb. About 70 per cent of babies born with with it die within seven months of birth.

Katrina and husband James have overseen fundraising efforts for organisations that help them – the Rainbow's Hospice in Loughborough, which gives 14 days of respite care each year, and the children's ward at Kettering General Hospital.

A fundraising night at the Burton Park Country Club in May, an auction at LA Fitness in Kettering, a fancy dress day at Burton Latimer and a 24- hour pool match at the Burton Latimer Working Men's Club have all helped raise more than £4,000.

Mrs Baker said: "Without everyone's help we wouldn't have reached our target. Many thanks go to the companies that donated raffle prizes and to those at Burton Park Country Club and Retro Sounds discos, who donated the hall and disco for free. And special thanks to our families and friends who have supported us from day one."

Event manager at the Rainbows Hospice, Stacey Staines said: "We never ask our families to fundraise for us, as we provide a free service, but obviously we are delighted t he Baker family has raised so much money. It is much appreciated."