Pakistani Child Chosen for Free Treatment Worth Rs. 350 Million for a Rare Disorder

An international pharmaceutical company has selected a child from Chiniot through a lucky draw for the treatment of spinal muscular atrophy, a rare genetic neuromuscular disease.

According to a report from Samaa, the treatment for spinal muscular atrophy costs around Rs. 350 million and the international pharmaceutical firm will bear all the expenses of the treatment of the child.

Two-year-old Shahvaiz will be the first Pakistani child to receive the treatment for spinal muscular atrophy as its cure isn’t available in the country. His parents had initially gone for his treatment at Aga Khan University (AKU) Hospital in Karachi.

Although the hospital told them the treatment for the disease isn’t available in Pakistan, they registered Shahvaiz in the lucky draw of the company that selects a handful of patients from all over the world for free treatment each year.

The spinal muscular disorder is an inherited disease that weakens the muscles, not only making them unusable but also reducing their size due to lack of use. In this disorder, a special type of nerve muscle that controls the movement of muscles is lost.

As per an estimate, 1 out of every 10,000 children around the world is born with a spinal muscular disorder. Chances of children getting affected with the disorder are the highest in cousin marriage and those born with it don’t live beyond two years of age in most cases.

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