9 January 2013  A YOUNG couple have been told that both their daughter, aged six, and their unborn baby have a premature ageing syndrome that will kill them.
They’ve been diagnosed with Cockayne Syndrome, which affects one in 500,000 people – and leaves them with an average life expectancy of 12 years.
Ella Barden, six, has been diagnosed with the condition after years of tests.
Now her pregnant mum, Jodie, has discovered her unborn daughter had also tested positive.
Jodie, husband Luke, 27, and their two-year-old son Alex, who does not have the syndrome, have set up a bucket list of activities such as ice skating and swimming with dolphins which Ella can enjoy before she becomes too ill.
Jodie, 26, of Speedwell Close, Witham, Essex, said: "We are absolutely devastated.
"Everytime she gets ill you think, is this it?
"We have to take it day by day and can't look too far in the future as it is just too upsetting and we have got to try and keep positive.
"Somehow Alex will have to deal with losing two sisters."
Jodie, who is due to give birth in April, said of her decision to continue with her pregnancy: "I would still have to give birth to my child and I would rather know I had given my child happy memories and given her a chance to love life and live it happily and to enjoy life.
"It is not going to be easy in the end and I have thought about that lots, endlessly,but at the end of the day I have still got to bear her either way."
Jodie and Luke, a HGV driver, both carry the gene for the syndrome but are not aware of anyone in their families having suffered from it.
Jodie said: "It is one small chance us meeting and both having the gene.
"We have been through the blame thing, but only blaming ourselves. We can't do that, we can't let everything fall apart.
"My worst fear in life, when we didn't know what was wrong with her, was we were worried if it was something absolutely devastating. Now my worst fear has been realised.
"We have got to deal with it and get on with it and try and keep positive. We have to stick together as it will make us stronger."
The couple first knew something was wrong with Ella when was nine-months-old. She had stopped growing and putting on weight.
She underwent numerous tests including two MRI scans but nothing was picked up for five years.
Jodie gave up her job as a graphic designer last August to look after Ella.
In November, a geneticist at Great Ormond Street Hospital warned the family it could be Cockayne Syndrome.
Jodie said: "I went home and Googled it and unfortunately it was fitting and I thought 'Oh my God' that might be it."
Ella, who attends Southview School in Witham, can only say a few words and cannot walk.
There is no prognosis for how it will affect her in future but it is likely she will age prematurely.
Her family are raising money for the bucket list and to raise money for research into the syndrome.
"We have got to make memories with Ella,” said Jodie.
"She doesn't want us to be upset, she wants us to be happy.
"She is such a lovely girl and very loving.
"Everyday is special when you know it is coming to an end."
For more information visit Ella’s Butterfly Fundraising Page on Facebook.