Many born with the genetic disorder thalassaemia major will die before they turn 10. Donated blood can help keep them alive, but is hard to find.

Lahore and Karachi, Pakistan — Abdul Hadi Nadir’s tiny body wears down quickly when the fever sets in. His skin turns yellow, he stops eating, and his mother, Rimsha Nadir, knows exactly what that means – it is time for more blood.

At a quiet but packed clinic in Lahore, Rimsha cradles her three-and-a-half-year-old son while sitting among other families with children.

Abdul Hadi is one of the youngest in the room. Around him, children sit quietly, some tethered to their IV drips and receiving blood. Nearby, a mother sits at the foot of her 12-year-old son’s reclining chair, gently massaging his leg.

Rimsha places her son on a chair beside her and hands him her mobile phone. The toddler is momentarily distracted by a video on what will be a long day of having to stay still.

Rimsha is awaiting the blood transfusion that will restore her son’s energy, if only for a few weeks.

“After he gets [the blood],” the 22-year-old says softly, “then he eats everything.”

It is a routine Rimsha knows well – monthly visits that stretch from morning until evening, and the emotional weight of watching her child teeter between sickness and survival.

At just nine months old, Abdul Hadi was diagnosed with beta thalassaemia major – the severest form of a genetic blood disorder that causes the body to produce abnormal haemoglobin, resulting in chronic anaemia. The condition requires blood transfusions – the only known treatment.

Rimsha had known about thalassaemia before her son’s diagnosis. Her husband’s nephew died of it at age nine. His parents were not able to bring him into the clinic for regular transfusions, and before he died, he required a new transfusion every three days.

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Despite this, Rimsha clings to hope for her child’s future. “He will study, he will become a doctor, God willing,” she says in a soft voice.

In Pakistan, some 100,000 people are registered in hospitals as thalassaemia major patients, and more than 5,000 children are born with the disease each year, though there is no data on how many die from the disorder. But in a country where the average lifespan for a child born with the disease is just 10 years, families like Rimsha’s are caught in an endless cycle of securing regular blood transfusions.

Genetic disorder

Pakistan is part of the “thalassaemi