Children are a sweet blessing, and I am grateful to be the mother of seven wonderful kids. My younger son, Shayan, was born in 2017. As the youngest son in the family, he holds a special place in all our hearts.Shayan has brought so much joy and laughter into our home with his infectious smile and playful antics. Little did we know, our journey with Shayan would take an unexpected turn. Hi, I’m Zainab, and I want to share my son Shayan’s story with you. Shayan is a brave little boy who has hemophilia, a condition that makes it hard for his blood to clot. We found out about his hemophilia when he was just a baby, during a simple medical procedure of circumcision.
Living with hemophilia is tough. Shayan’s blood doesn’t clot properly, so even a small cut can make him bleed a lot. It’s scary for us as parents because we never know when he might get hurt. We have to be really careful and look after him all the time. He wants to run and play with his siblings, but we have to be cautious. Even when shayan’s elder brother plays games like cricket and kite flying in the streets that is a source of anxiety for us, as we fear for Shayan’s safety with every fall and bump.
I remember one particular incident when the children were playing together, and Shayan fell, breaking his arm. The pain and anguish in his eyes mirrored my own, as I felt a surge of helplessness and desperation wash over me. It’s moments like these that remind us of the harsh reality of hemophilia, robbing Shayan of the carefree childhood he deserves. His brothers and sisters pray for him every day, wishing for him to get better soon.
Our family lives on a modest income, with my husband earning 70,000 Pakistani rupeesa month.We are living in a rented house. The financial burden of Shayan’s treatment weighs heavily on us, often forcing us to make difficult choices between putting food on the table and paying for his medical expenses. His treatment costs are exorbitant, amounting to millions, a sum that seems unattainable for a family like ours. Despite all the challenges, Shayan remains hopeful. He dreams of becoming a doctor one day, to help other kids like him. He’s such a brave boy, and his dreams give us hope for the future.
An initiative by SPEAK Trust committed to address public health inequities with a special focus on rare disease affected patients in Pakistan
