article_snippet: A couple are more at risk of having a child with the condition if A couple have a family history of the condition, risk also rises with maternal age.
article_snippet: About 50 per cent of babies survive for longer than a week and only five to ten per cent survive for longer than a year.
article_snippet: During the pregnancy, Mr and Mrs Cartmill refused genetic testing because of the risk of miscarriage - and say Mr and Mrs Cartmill knew that whatever happened, it would not have changed Mr and Mrs Cartmill minds about going ahead with the pregnancy.
article_snippet: is one of only 5 to 10 per cent of children with the condition to live past children first year.
article_snippet: the condition is so rare doctors do not know what the prognosis will be for the future, but stress that the disease is severely disabling.
highlights_snippet: Only 5 to 10 per cent  of babies with The condition live to a year old .
  
highlights_snippet: Condition is so rare doctors cannot say what the prognosis for the future is .