Their own funds for the treatment of their thalassaemic daughter are drying up. But a couple in West Bengal is braving the odds to spread awareness about the disease.
Meet Samir Ghosh and his wife Pampa of Hooghly district. Before tying the knot, they didn't know how thalassaemia could affect their conjugal life. But now they have realised the importance of a premarital blood detection test and initiated an awareness campaign against this disease in rural Bengal.
Their inspiration is the plight of their 19-month-old daughter Soumi, a thalassaemia patient who has to be given fresh blood every alternate month.
The couple does not want other parents to undergo the same trauma. So they inform brides and grooms in villages about the importance of the blood test before getting married.
"When Soumi was only six months, she suddenly fell ill. We took her to the nearest Arambag Sub-divisional Hospital in Hooghly. There she was referred to the NRS Medical College and Hospital in Kolkata where the doctor told us Soumi is a thalassaemia patient," said Pampa.
"The moment we heard that, our world almost came crashing down. We were so shocked that initially we could not believe the doctor. Later it was found that both Samir and I were thalassaemia carriers," she said.
The couple is very worried about the baby who needs regular blood transfusion.
"I don't know how long we can continue like this. We have a very limited income and it's becoming more and more difficult for us to continue with her treatment," she said.
The couple has initiated a campaign to inform people about premarital blood tests. Influenced by their campaign, more than 30 couples from various villages in Hooghly district have got their blood tested before getting married.
"Whenever we hear of a marriage we go to that place with our child. We make them aware of the consequences of a union like ours," she added.
The couple's campaign has impressed the entire medical fraternity of the Arambag sub-divisional hospital. Many doctors - like Arambag Hospital's child specialist Nanigopal Roy - have joined hands with Samir and Pampa to spread thalassaemia awareness in rural Bengal.
The Thalassaemia Society of India (TSI) also feels the need for such campaigns since lack of awareness is the only impediment in thalassaemia prevention.
"According to statistics available with us, there are about 30,000 thalassaemia patients in West Bengal and this number is fast increasing with 2,500-3,000 fresh cases reported every year," TSI secretary Tapas Sengupta told IANS.
He said most patients don't get access to proper treatment in Bengal. The state government has also failed to generate mass awareness about the disease, he said.
"It's very surprising that our government doesn't even have any ready data on the number of thalassaemia patients in West Bengal. There is no comprehensive programme of the state government to eradicate it," Sengupta claimed.
He said if the indifference continued thalassaemia would definitely emerge as an endemic disease in West Bengal.
Thalassaemia is a genetic blood disorder in which the red cells of the blood are abnormal and die fast leading to anaemia. After several years, iron gets deposited in various organs, affecting their function and leading to death.
India is believed to have nearly 30 million carriers of the thalassaemia gene. It is reportedly more prevalent among Sindhis, Punjabis, Gujaratis, Bengalis, Gaurs and Saraswats.