The world’s costliest medicine is the only way to save these siblings

Zainab and Zunaira are suffering from Spinal Muscular Atrophy-Type 1, a genetic disorder that affects their overall mobility, and might prove to be fatal if their parents are unable to raise Rs 32 crores for their treatment.

Ashfaque Chaudhary from Mumbai has been out of work for a year due to the Coronavirus pandemic and the subsequent lockdowns. He was straining to satisfy his family’s basic needs before the outbreak as well. Today, he is facing a dual battle: joblessness and helplessness, since he is unable to save his two lovely children from a rare genetic illness. Rs 32 crores is an unimaginable sum for a middle-class family like his.null

The couple’s first child, Zainab, was born in 2019, and their second child, Zunaira, was born in 2020. They were ecstatic to have two children. But as Zainab became one-year-old, they began noting changes in Zainab’s body movements. On the other hand, Zainab couldn’t roll over on the bed; her hands were shaky, as was her hold on her toys.

“When Zainab was born, we felt as if Allah had heard our prayers. We were over the moon! My wife was already thinking about how she would dress her up and which school she would go to. Soon after, Zunaira came into our lives. Her hands and legs were moving, and her smile could melt the hardest heart. However, a few months later, they both began to exhibit symptoms that we struggled to understand. We had never heard of such an illness,” said Ashfaque Chaudhary.

The parents were shocked!. They did, however, decide to seek advice from the experts at P. D. Hinduja National Hospital. Their lives were flipped upside down when they were diagnosed with SMA-1.

Spinal muscular atrophy (SMA) is a genetic (inherited) neuromuscular disease that causes muscles to become weak and waste away. People with SMA lose a specific type of nerve cell in the spinal cord (called motor neurons) that control muscle movement. Without these motor neurons, muscles don’t receive nerve signals that make muscles move.

Because of their disability, the sisters require assistance while doing the most basic activities like eating, crawling, and even breathing. Their immune systems are so weak that they can’t even fight the normal illnesses. It takes weeks to recover from a cough, cold, or fever. And hence, these innocent little girls have been in and out of ICU many times.

“Needles were poked into their bodies to test their motor response. Their cries still echo in our ears. This is not the fate we’d hoped for them. Today, they struggle to eat and even move. They are losing their voice. It’s a slow painful suffering inflicted upon my innocent girls,” said Ashfaque Chaudhary

The bereaved parents have never experienced the milestones and parenthood that all new parents go through. They give their love and comfort to their daughters every day. Yet, they can’t seem to stop blaming themselves and are consumed with guilt.

Zolgensma is the only treatment for SMA. It costs $2.1 million (approx Rs. 16 18 crores). To rescue both children, they will need to raise more than Rs. 32 crores. The medication, however, will have to be imported from the United States and administered at the hospital

Zainab and Zunaira are regularly receiving physiotherapy. This only buys a small amount of time. One-time gene replacement with Zolgensma can give these babies a new life. The parents are unable to fight this war alone. Despite selling some jewellery and knocking on every door asking for assistance, they have no other choice left to save their daughters.

The girls’ health is far from ideal, and the span for Zolgensma will close once they reach the age of two. Given their condition and time constraints, they have no option but to start a fundraiser and hope they gather enough people to join their cause. With this campaign, the parents are appealing to everyone reading this to contribute as much as possible. With your help, the path to Rs. 32 crores can be covered easily.


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