Munjjamil Shaikh is a five-year-old boy at our Beacon Learning Centre pre-primary class in the Kalwa slum community.
He is also one of 10,000 children born each year in India with thalassemia – a genetic blood disorder marked by abnormal haemoglobin levels. The disease has no known cure besides bone marrow transplants and gene therapy, both of which are exorbitantly expensive treatments here.
For most children like Munjjamil, the only viable management of the disease is routine blood transfusions for life.
Munjjamil’s father Mustkim Shaikh sells socks in the local market and his mother Momina is a homemaker. He has an older sister Alfiya, aged 8, who goes to a school nearby. Munjammil had joined our classes a while ago but he often missed them, or was inactive and unwell when he did come.
When his teachers inquired about his regular absences, Munjjamil’s mother spoke about his disease and said that they had known about his diagnosis from the time he was six months old, but hadn’t treated him regularly as they couldn’t afford to.
In India, known as the world’s thalassemia capital, the average patient spends over 1 lakh rupees (1500 USD) a year on treatment. About 50 percent of those with the disease don’t cross 25 years – many because they simply can’t afford regular blood transfusions. With his disease unmonitored and untreated, little Munjjamil had spent most of his short life in ill health. His chances at a regular childhood and formal education were slim.
Because of your support though, Munjjamil’s story took a turn for hope a few months ago. Our medical team was able to enroll Munjjamil at a hospital that would provide him regular assistance; and they were also successful in arranging reimbursements for his medical bills! Munjjamil’s family thanks you for helping them navigate through the red-tape maze of his demanding disease.
After several months of help, he is now well enough for regular school and he loves all his class activities. His mother can’t believe the changes in her little boy.
Thank you for intervening and restoring one more life to the promise of a sustained education!
