A COUPLE from South Ockendon are backing a national campaign calling for the government to provide more funding into a condition which leaves unborn babies with a 50 percent chance of survival.
Despite Congenital Diaphragmatic Hernia affecting one in every 2,500 births there has been little research into what causes the illness and possible treatment and prevention.
Callum Axford, now two, was born with a gaping hole in his diaphragm meaning his stomach was pressing into his lungs.
Having Congenital Diaphragmatic Hernia and also born seven weeks premature, the tot had just a 25 percent chance of survival.
Following a spate of deaths from the illness recently, The Congenital Diaphragmatic Hernia Charity launched a petition.
Backed by hundreds of parents like Faye and Carl Axford it calls for the government to provide funding to find treatment and save lives.
Mrs Axford, 29, said: “The condition is as common as Cystic Fibrosis and Spina Bifida but not many people have heard of it. So many babies keep passing away and some families are dealing with such grief that they don’t think about making people aware of the condition.
“There is such a support network with all the families of children affected. It’s lovely for us because Callum is such a success story but you hear about so many who don’t survive and it is devastating.”
Mrs Axford was just 20 weeks pregnant when she discovered her unborn son had Congenital Diaphragmatic Hernia.
She declined the offer of a termination and went on to have her labour stopped four times as it was dangerously early.
Mrs Axford said: “It was such a horrible feeling because we were angry and upset when we should have been looking forward to welcoming our little boy. There was no excitement because we didn’t want him to come out.
“If Callum had been perfectly fine we would have had another baby by now but until he is like a normal boy for his age it’s not really fair on him or us.”
Callum’s development is behind for his age but he is now starting to learn to walk.
Due to being fed by a tube for the first few months of his life he has a phobia of food and can only drink special milk.
Mrs Axford added: “Something needs to be done. There are petitions to stop tax on alcohol which have millions of signatures but I think saving a childs life is more important.”
The petition currently has almost 6,000 signatures but needs 100,000 in order for the issue to be considered in parliament.
To show your support visit http://epetitions.direct.gov.uk/petitions/33898.