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Parents' campaign for research into condition
3:40pm Friday 1st June 2012 in News
THE parents of a “miracle baby” who was born seven weeks early with a life-threatening disorder are hoping to force the Government into funding vital research into the condition.
Carl and Faye Axford are backing a charity campaign to get the Department of Health to fund finding a cure for congenital diaphragmatic hernia.
The couple, from Stanford-le-Hope, have become experts on the condition after son, Callum, was born so early he had a hole in his diaphragm.
Callum is known as the “Kings Miracle” because he is the most premature baby with the hernia to survive at Kings College Hospital in London, where he spent the first 231 days of his life.
This type of hernia is a birth defect of the diaphragm, which can be fatal in infants. It also leads to problems with the lungs and internal organs.
But against all the odds Callum, who weighed just 5lb 4oz at birth, has pulled through and will celebrate his second birthday on July 5.
Faye, 30, said: “I can’t believe how well Callum is doing now.
“He has recently had his feeding tube removed from his stomach, but still only has milk in his mouth by syringe as he has a phobia of food.
“It is a really slow process, and we get so excited when he even touches a biscuit!
“Physically he is catching up since being home, however we have been in and out of hospital with collapsed lungs and chest infections.
“But given the fact we thought Callum would never survive, it’s amazing.”
Faye and Carl, 29, are supporting the charity CDH-UK, which has launched an online petition requesting the Government funding.
She added: “In order to get the Government to listen, we need 100,000 signatures by this time next year, so the issue can go before the House of Commons.
“It's been a really hard, long journey and we still have problems, but we are the lucky ones. Many babies don’t survive.”
Visit http://epetitions.direct. gov.uk/petitions/33898
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