Samantha Parkinson, 14, of Boundary Avenue, Rushden, was diagnosed with Ring Chromosome 18 when she was just three.

Because it is such a rare condition, doctors do not know much about it and her parents Michelle and Carl launched a website last year to help raise money and to offer support and advice to other families.

Mrs Parkinson, 39, said: "Samantha has an MRI scan on Tuesday and should then be able to have a heart valve replacement in September.

"She has suffered three heart attacks already and without this operation we could lose her.

"It's a big risk but so is not having the operation."

Mrs Parkinson told how she had a normal pregnancy and Samantha was fine when she was born.

But when she was six weeks old, doctors discovered a heart murmur and, at 16 months, she suffered a serious asthma attack.

Ring Chromosome 18 was finally diagnosed when she was three.

As she got older she suffered more and more problems and left mainstream schools to go to Rowan Gate in Wellingborough, before moving to a school in Bedfordshire.

Ring Chromosome 18 results when a piece, or pieces, of the long and short arms of the chromosome are missing.

They may contain genes which are important in development and growth and can cause speech and visual problems, heart defects and growth problems.

When the family launched their website – www.childrenwithringchromosome18.com – they discovered there were just 23 sufferers across the whole of Europe.

Mrs Parkinson said: "Our ultimate aim is to fund a research centre. The only one in the world is in Utah in the States."

The next big fundraising event is a charity ball at Kettering Conference Centre on Saturday, November 6, from 6.30pm.

A signed David Beckham shirt will be auctioned on the night.

For more details about the event, fundraising, or for information about the illness, visit the site, or contact Mrs Parkinson on 07908 615101.

© 2010 Johnston Press Digital Publishing