Ranaghat: For one-year-old Aasmika Das of Ranaghat Daspara in Nadia, the clock is ticking fast.
Daughter of a young web designer, Aasmika is facing an unusual deadline of June this year, by which she needs to be administered a vaccine, which is not just costly enough rather beyond the normal affording capacity of an ordinary individual.
Asmika has been diagnosed with a rare and debilitating genetic condition known as Spinal Muscular Atrophy (SMA). The disease, which progressively weakens muscles, has put her life in jeopardy.
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”, a Calcutta based neurologist said.
As a result of the disease, she cannot move her legs and hand since birth. “The problem was noticed when she was four months old….Since then, we consulted many doctors in Calcutta, Chennai and Bangalore who all diagnosed her of having SMA”, Aasmika’s mother Laxmi said.
Specialized Doctors in Kolkata, Chennai and Bangalore who examined the girl have prescribed an intravenous injection named “Zolgensma” which costs a hefty ₹16 crores as the only possible lifeline for her.
“This is the most appropriate medicine and this life saving medicine should be administered as early as possible before the child completes two years of age”, stated Sanjukta Roy, Clinical Director, Department of Paediatrics of Peerless Hospitex Hospital and Research Centre.
“Zolgensma” is a gene therapy called 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.
Time is of the essence, as delays can 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 Suvongkar Das and Laxmi Das.
Suvongkar, a web designer by profession, was attached to a Ranaghat based farm, but lost his job while managing the treatment of Aasmika. While busy running from pillar to post to accumulate funds, Suvongkar now totally depends on the monthly pension of his retired father. While the targeted amount of Rupees 16 lakhs to procure the life saving vaccine is still far away, the couple now finding it hard to manage the recurring monthly medicine of the child amount to Rupees six lakh.
“It is an unparalleled fight against the odds, which we wish no one should ever encounter. We have been trying hard to go against these odds with the only hope that our daughter will become a normal child with other children of her age. But tmit appears that the clock has been ticking faster now…”, Suvongkar told The NfN on Thursday while celebrating the first birthday of Aasmika.
Responding to the appeal of the girl’s parents several individuals, social organisations, local administration have come forward to help the girl to survive so that the invaluable vaccine could be brought from USA.
Suvongkar and his wife Laxmi have also appealed to centre and state – to the PMO and CMO for help. But till now nothing has been heard 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. In Nadia, several organisations from across the district have launched special drive to arrange funds for Ashmika. Recently leader of opposition in state assembly Suvendu Adhikari met her parents at their Ranaghat home, when he promised all sorts of help.
“With the support of the crowd funding platform so far around Rs.3 Cr has been gathered, which is too little for the coveted amount. We are running against time appealing everyone with folded hand to save our daughter”, Aasmika’s mother Laxmi said.
Responding to girl’s plight eminent musicians like Subhamita Banerjee, Rupam Islam, Bickram Ghosh have come forward to help contributing a good amount from their honorarium received from a concert in the town while making appeal to others to save her life.
Ashmita’s story has touched hearts as many came forward to save her life. Chairman of Ranaghat municipality Kosholdev Bandopadhyaya said, “We are hopeful to save her with such collective efforts”.
Social media platforms have become a beacon of hope for Aasmika’s family, with campaigns aiming to reach potential donors across the country.
The clock is ticking, and Ashmita’s parents remain steadfast in their determination to save her. “We are overwhelmed by the support we have received so far, but we still have a long way to go. We pray that kind-hearted people will continue to help us in our fight to save our only child,” said Aasmika’s father, his voice filled with both hope and despair. (Contact mobile of Suvongkar Das: 9046837117)