Aplastic anaemia is not incurable, but for 12-year-old Muhammad Usman it might as well be.
As he sits on a bed playing a game on a cellphone at the high dependency unit of Benazir Bhutto Hospital, Usman’s mother narrates their ordeal.
For the past four months, Usman’s family has been struggling to arrange Rs2 million for his bone marrow transplant (BMT).
The class five student was brought to the hospital after he complained of body pains and fell unconscious at his school in Banjnial village near Tarnol.
Doctors diagnosed him with aplastic anaemia, a condition where bone marrow does not produce sufficient new cells to replenish blood cells. The disease can result in a cut-off of oxygen supply to the blood and cause several infections and severe bleeding, according to his doctors.
The BMT is carried out only at Armed Forces Institute of Bone Marrow Transplant in Combined Military Hospital Rawalpindi, and costs around Rs2.1 million.
But money is not the only hurdle. The family also need to arrange for a willing person whose bone marrow matches that of Usman. The test that checks for matches, Human Leukocyte Antigen Test, is done at KRL Hospital and costs about Rs20,000, according to Dr Umer Saeed, Usman’s doctor.
With seven siblings as potential matches, the cost for testing is about Rs140,000. The chances that a sibling will be a viable donor are high, as each sibling has a one in four chance to have a matching bone marrow.
But while the family arranges for the transplant and testing costs, even the stopgap measure of blood transfusion has become a burden too difficult to bear.
“My husband, who ploughs land, is the sole breadwinner of our family. We have six daughters and two sons and don’t have enough money to bear the medical costs,” said Sundal Bibi.
“We have already sold one of our two buffalos and taken Rs100,000 as loan but the doctors are asking for too much money. My brothers and brother-in-law are daily-wage labourers and they cannot help me either,” she added in frustration.
When asked if she had approached the Pakistan Baitul Maal, the aggrieved mother said the procedure was too complicated for her to understand.
She appealed to the government to save her little angel, so that he may smile again.
Published in The Express Tribune, March 1st, 2012.