Ten-year-old Saida Tabassum and her three-year-old brother, Md Shafique Raiyan, are constantly fighting for survival.
At the same time, their parents struggle every day to cover the high cost of their treatment, leaving the family in distress.
Although doctors advised their mother to seek treatment during her pregnancy, she ignored the advice, endangering the lives of her two children.
Thalassaemia major is a condition in which the body does not produce enough haemoglobin to meet its needs, leaving patients reliant on regular blood transfusions from donors.
"Throughout his or her life, the patient will require blood transfusions every three to four weeks. Aside from the financial and emotional stress, the most difficult challenge our family faces is arranging safe blood on a regular basis," said Saida and Shafique's mother.
Thalassaemia, according to experts, is a blood disorder that causes red blood cells to weaken and die. It is also caused by defective or missing genes, which severely impair the production of haemoglobin, an essential protein that allows red blood cells to carry oxygen.
They went on to say that if both parents have thalassaemia, their child has a 25% chance of inheriting the condition.
"Such a child is diagnosed with thalassaemia major," they said, adding that these children need blood transfusions on a regular basis throughout their lives.
According to experts, over 60,000 people in Bangladesh are currently suffering from thalassaemia, which is primarily due to a lack of awareness among couples prior to marriage.
According to a 2024 survey conducted by the Bangladesh Bureau of Statistics (BBS), 11.4 per cent of the country's population aged 14 to 35 has thalassaemia. An estimated 6,000 to 13,000 children are born with the disease each year, putting future generations' health at risk.
Experts blamed parental ignorance for the spread of thalassaemia, the most common genetic condition passed down to children. They stated that the disease can be effectively prevented through genetic screening and proper counselling.
"To save families from lifelong suffering, all couples should test for carrier status before having a child," said Dr Md Abdur Rahim, secretary general of the Bangladesh Thalassaemia Foundation.
"If every expectant mother is informed and encouraged to get tested to see if she is a thalassaemia carrier, the spread can be significantly reduced," he said.
"Thalassaemia prevention relies heavily on raising awareness. Many parents avoid diagnosis and unknowingly pass on faulty genes to their children because they are ignorant," Dr Rahim added.
"Thalassaemia is not curable with medications, but it is entirely preventable. Bone marrow transplantation is not only costly but also a complicated procedure due to donor matching. As a result, raising public awareness about prevention is critical to reducing its occurrence," he said.
Dr Rahim also emphasised the importance of government intervention, saying, "The government must motivate gynaecologists and pathology centres to ensure that every pregnant woman receives the HbA2 test before the 14th week of pregnancy."
Experts noted that in developed countries, patient awareness is high, and people choose screening tests on their own.
Organisations such as the Bangladesh Thalassaemia Foundation (BTF) and the newly established Bangladesh Thalassaemia Patients and Parents' Welfare Association (BTPWA) are actively working to improve patients' quality of life and raise awareness in order to prevent new cases.
