Warriors and Survivors - 245

 Children Cancer Stories by Rukh Yusuf - Blog # 245

I am Rukh Yusuf, Clinical Pharmacist, also specialized in Total Parenteral Nutrition and Bone Marrow Transplant. I have worked in the Pediatric Oncology unit of a public hospital. The mission of this blog is to bring to you the real-life stories of child patients suffering from cancer. Cancer is still a difficult disease to handle and treat. However, when it strikes the children, some so young that they cannot even speak, their agony is beyond expression and words. Let us pray especially for children suffering from cancer for early and complete remission. May Allah shower His Merciful Blessings upon them. Aameen. 

Waqar’s Story: A Childhood Measured in Transfusions, Not Time

Waqar is ten years old. When he laughs quietly, sometimes shyly, you might not guess what lies beneath the surface of that smile. You wouldn’t know, at first glance, that his life has been woven through hospital corridors, needles, and blood bags since infancy; that every two to three weeks he sits in a chair while nurses gently insert a needle into his veins to give him life-saving blood. His is not a story of heroic feats or dramatic rescues, but a deeply human one: the slow, heartfelt persistence of a child living with beta-thalassemia major: and a family trying to keep him alive.

What Is Beta-Thalassemia Major

Beta-thalassemia major is an inherited blood disorder that affects hemoglobin, the protein in red blood cells that carries oxygen to the body’s tissues. In children with this condition, the body cannot produce enough functional hemoglobin, leading to severe anemia, weakness, fatigue, and low energy. Without regular blood transfusions, the body literally starves for oxygen, and vital organs struggle to function. As Waqar’s parents describe it, “his body wears out faster than other kids’” because his blood can’t carry the life force his heart and brain need. Symptoms often include severe fatigue, jaundice (yellowing of skin), poor growth, and frequent infections. Over time, complications such as enlarged spleen, bone changes, and iron overload affecting the heart and liver can occur unless managed carefully. 

A Burden Felt Across Asia and Deeply in Pakistan

In Asia, especially the subcontinent, the Mediterranean, and the Middle East, inherited blood disorders like beta-thalassemia are significantly more common than in many Western countries. A large proportion of global births affected by this disorder occur in these regions. 

Pakistan, with a population exceeding 225 million people, carries the high burdens of beta-thalassemia. An estimated 5–7% of the population are carriers of the beta-thalassemia gene more than 10 million people and every year about 5,000 children are born with the major form of the disease that demands lifelong management.

Many families do not know their genetic carrier status until a child is diagnosed. Cultural factors such as consanguineous (cousin) marriages, limited awareness, and scarce access to screening and prenatal counseling further contribute to the number of affected births. 

Life With and Without Treatment

For children like Waqar, the engine that keeps their body working is regular blood transfusion often every few weeks. Each transfusion helps fill the gap that his bone marrow cannot, boosting hemoglobin levels enough to keep him active and out of acute crisis. Alongside transfusions, iron chelation therapy is given to prevent excess iron from building up in organs (a side-effect of receiving blood repeatedly).

But consistent access to safe blood and chelation medicine is not a given. In Pakistan and many parts of South Asia, families often travel long distances to find properly screened and compatible blood, sometimes waiting hours in overcrowded centers. The financial cost, roughly thousands of Pakistani rupees each month for medicine and supplies is beyond reach for many families struggling to make ends meet. 

If a child without treatment could survive infancy, the body’s chronic anemia would lead to failure of multiple organs, dangerously low oxygen delivery to the heart and brain, and early death often before adolescence. With treatment, children like Waqar can survive into adulthood, but the quality of life is shaped by how dependable and comprehensive their medical care is.

The Family Behind the Child

Waqar’s mother recalls when he was diagnosed around his first birthday: “I remember holding him, so small, and feeling like the world had shifted.” It was the beginning of an unchosen routine: doctors’ visits, blood tests, transfusions, and an ever-present worry over infections or complications.

Their days are calibrated by waiting room chairs, the lull of hospital fans, and budgets spent on medicine instead of school supplies. Siblings learn early not to complain about minor injuries because their brother’s bare veins are already familiar with needles. Financial strain, emotional exhaustion, and the constant fear of something going wrong are not abstract concerns they are daily realities.

In communities where stigma and misunderstanding about thalassemia persist, families also wrestle with social isolation and lack of understanding. Some parents hesitate to talk openly about the disease, worried it will affect their child’s future opportunities or social acceptance. 

A Quiet Call for Awareness

There are medical efforts to expand carrier screening, premarital counseling, and community awareness, but implementation is uneven and limited. Prevention strategies including genetic counseling and prenatal diagnosis can significantly reduce the number of children born with beta-thalassemia major, but these services are often confined to urban centers and are unaffordable or unknown to many families. 

What Waqar’s story highlights is not just the clinical profile of a genetic disease, but the lived experience of a child and his family navigating a chronic condition in a resource limited context. It is a story that invites both empathy and action reminding us that behind every statistic is a beating heart, a family budget, and dreams for a future beyond transfusion chairs.

In Waqar’s eyes, when he is not tired, when he plays tag with his cousins, when he insists on reading aloud at bedtime, there is a simple truth: he is a child first, deserving of care, hope, and the possibility that one day, treatment and prevention will be not a luxury but a right for every family facing thalassemia.

Prayers for Waqar and all the sick children and their families who have to face this pain of cancer. May Allah make it easy for them. Aameen