VIAL OF LIFE

A Hyderabad couple’s journey to get the world’s costliest medicine for their three-year-old son

- RAHUL DEVULAPALLI

AYAANSH GUPTA COULD string together words when he was just one, his parents said. And he could recite mantras when he was two. At three, he does console his mother whenever he notices tears in her eyes. Words have been the lifeline for Ayaansh, who cannot yet sit, stand, chew or even breathe properly. “His speech helped us fight for him. It kept us motivated,” said his father, Yogesh.

In 2019, just before he turned one, Ayaansh was diagnosed with spinal muscular atrophy (SMA). Hyderabad residents Yogesh and Rupal were told that their son would live for only two or three more years. The rare genetic disease affects the central nervous system, severely limiting muscle movement.

The couple had first observed abnormalities when he was six months old. “He had limited movement,” said Yogesh. “He used to get tired in just one or two minutes. We thought it could just be a delay in development. One day, he suddenly lost control of his neck.”

After a mental assessment and a few tests, the neuromuscular disease was diagnosed.

“After the reports came, we broke down in front of the doctors as we did not know what to do,” said Yogesh. “The doctors also conveyed that if we plan to have another child, there would be a 20 per cent chance of the child having the same disorder.”