We’re taught to expect unconditional love from our parents, but I think it is more the gift our children give us. It’s they who love us helplessly, no matter what or who we are. This line by Kathryn Harrison proved to be true once again, as a father attempts with all his might to ensure the survival of his child.

Abhishek Verma, working in a Delhi firm earning 25,000 monthly, had never heard of Spinal Muscular Atrophy (SMA) and Zolegensma until his only daughter, 18-month-old Ishani was diagnosed with it. Ishani, who suffers from Type I Spinal muscular atrophy a very rare, requires a ventilator at home and a feeding tube at all times.

Soon after her birth, Ishani would let out unexplained fists and cries. Verma and his wife Neelam took their daughter to a doctor one day. After several referrals, tests, and diagnosis, doctors in Delhi told them about the rare genetic disorder she was suffering from and its implications on the toddler’s body — if not treated on time, it destroys motor neurons, the nerve cells in the brain stem and in the spinal cord which control essential skeletal muscle activity such as speaking, walking, breathing, and swallowing.

The only treatment for the disease is Novartis manufactured Zolgensma gene therapy to treat spinal muscular atrophy (SMA) which is the most expensive medicine globally; it costs 22 crores and one injection is enough to correct the genetic defect.

Spinal Muscle Atrophy: Representative image

Speaking to Times of India, Verma said, “I had lost all hope. Rs 22-crore… it was unthinkable. But during a discussion with office colleagues, I came to know about crowdfunding platforms. And I approached them. I know it is a Herculean task but I cannot sit helplessly and see my daughter sink. Her motor functions are slowing down with each passing day.”

Now the father is fighting against Father Time to raise the amount to get the medicine, Zolegensma, before Ishani turns two years old. Otherwise, the next option is another medicine which will be administered every three months till the patient is alive. It costs Rs 17 lakh per dose. With a less than a six-month window and Rs 22crore to raise, Verma has approached Milap Foundation and Impactguru.com. Verma’s pain is palpable. So is his hope. “I have faith that help will pour in. I will knock on every door. I cannot see her dying in front of my eyes.”

Ishani had trouble breathing from a young age: source

The Zolgensma gene therapy is a one-time injection that replaces the defective gene with a normal gene and rectifies the disorder. In 2019, US FDA approved this therapy for children aged less than two years. Desai said just one injection is enough to replace the defective gene. Elaborating on the disease, renowned neurosurgeon Dr. Sandeep Sehgal said, “It is a genetic disorder that is found in one in 10,000 cases. It usually occurs in the newborn where symptoms like the impaired movement of muscles manifest when the child is 18 months or so. The survival rate is quite low and gene therapy is the only treatment here but it is very costly.”

However, numbers and statistics, and probability mean little to a father who is determined to save the life of his only daughter. The collective goodwill of citizens and well-wishers can help save the life of Ishani and help her lead a normal life. The hopeful father will look at the sum raised every moment with tensed breath till the goal of 22 crores is reached.

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