9:10am Wednesday 9th January 2013
A young couple have been dealt a devastating double blow after discovering their daughter and unborn baby both have a fatal premature ageing syndrome.
Ella Barden, six, was diagnosed with Cockayne Syndrome three weeks ago, after years of tests to investigate why she had not been developing properly.
Then just before Christmas, her pregnant mum Jodie discovered her unborn daughter had also tested positive.
Children with Cockayne Syndrome have an average life expectancy of 12 years.
It affects an average of only two in every million people.
Jodie, of Speedwell Close, Witham, said: “It was horrible it happened just before Christmas.
“We had to put a brave face on.”
See this week's Times for the full story.
For more information visit Ella’s Butterfly Fundraising Page on Facebook.
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