For one-year-old Aasmika Das, the clock is ticking fast.

The daughter of a young web designer at Daspara near Ranaghat in Nadia district, Aasmika is staring at the deadline of June, by which she needs to be administered a vaccine that is prohibitively expensive.

Aasmika is diagnosed with a rare and debilitating genetic condition known as Spinal Muscular Atrophy (SMA), which progressively weakens muscles. It has put her life in jeopardy.

The SMA is a rare genetic disorder caused by a mutation in the SMN1 gene, responsible for producing a protein crucial for the survival of motor neurons.

"Without this protein, motor neurons deteriorate, leading to muscle weakness, impaired movement, and eventually respiratory failure," said a Calcutta-based neurologist.

As a result of the disease, the child cannot move her legs or hands since birth.

"The problem was noticed when she was four months old.... Since then, we consulted many doctors in Calcutta, Chennai and Bengaluru, all of whom confirmed the SMA diagnosis," said Aasmika's mother Laxmi Das.

Specialised doctors in the three cities who examined the girl have prescribed an intravenous injection — onasemnogene abeparvovec, sold under the brand name Zolgensma — that costs ₹16 crore, as the only possible lifeline for her.

“This is the most appropriate medicine and this life-saving medicine should be administered as soon as possible before the child completes two years of age,” said Sanjukta Roy, clinical director, department of paediatrics at the Peerless Hospitex Hospital and Research Centre.

Zolgensma is a gene therapy considered one of the most expensive medications globally. It replaces the faulty or missing SMN1 gene, effectively halting the disease’s progression if administered early enough in life.

Time is of the essence, as delays could lead to irreversible complications and decreased efficacy of the treatment.

The severity of SMA varies, with Type 1 — Aasmika’s diagnosis — being the most critical, often manifesting symptoms in early infancy, a doctor added.

However, the staggering cost poses an insurmountable challenge for her financially struggling parents Laxmi Das and Suvongkar Das (contact number: +91-9046837117).

Suvongkar, a web designer, was attached to a Ranaghat-based firm but lost his job while managing the treatment of Aasmika. Running from pillar to post to accumulate funds, Suvongkar now totally depends on the monthly pension of his retired father.

While the target of ₹16 crore to procure the life-saving vaccine is still far away, the couple now find it hard to manage the recurring monthly medicine expenses of the child, which add up to ₹6 lakh.

“We have been trying hard to go against odds with the only hope that our daughter will be able to start living a normal life, with other children of her age. But it appears that the clock has been ticking faster now," said Suvongkar on Thursday while celebrating the first birthday of his daughter.

Responding to the appeal of the girl’s parents, several individuals, social organisations, and the local administration have come forward to help her survive so that the invaluable vaccine could be bought from the US.

Suvongkar and Laxmi have appealed to the offices of Prime Minister Narendra Modi and chief minister Mamata Banerjee for help. But till now, there is no word from either, while the couple, with the support of friends, have been trying hard to accumulate the required price of the medicine through online crowdfunding platforms.