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Tuesday, September 21, 2021

Mumbai-based couple struggles to arrange Rs. 32 crores to save their children

“Even if I sell all that I have, I will not be able to afford Rs. 32 crores to give my daughters a chance to live”, says Mr. Ashfaque Chaudhary


Updated: August 2, 2021 3:53:19 pm

Mr. Ashfaque Chaudhary from Mumbai is fighting a double battle – joblessness due to the pandemic as well as helplessness. He is struggling to save his two beautiful daughters from a rare genetic disease. Rs. 32 crores can save his kids but this is an unthinkable amount for a family like his who hails from a simple background. 

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Today, he is asking the entire world to save his daughters

Zainab (20 m/o) and Zunaira (11 m/o), two adorable little girls, are suffering from Spinal Muscular Atrophy – Type 1. Both of them must receive Zolgensma as soon as possible, before they turn 2. This leaves Zainab, the elder sister, with barely 3-4 months to receive the drug

We always wanted a girl child. When Zainab was born, our happiness knew no bounds. My wife was already planning how she would dress her up, which school she would go to. But fate had something else in store for Zainab. Allah blessed us with a girl child again. I had promised myself that I will keep Zunaira safe, but when she started showing similar symptoms as her sister, I was shattered”, says Mr. Ashfaque Chaudhary. 

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How deadly is SMA?

SMA is a rare genetic disorder where a defective gene does not make enough of a protein needed for the motor neurons to work normally. This affects the functioning of the muscles and therefore, every body part from the head down. In fact, most children with type 1 SMA don’t live past age 2 because of breathing problems.

As a result of the illness, the sisters have missed many milestones that little babies develop. They can’t crawl or move their legs properly as their muscles are weak. They don’t have control over their neck and they need support while sitting. Their immune system is so weak that their body can’t even fight the mildest of viral infections. 

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Soon, they will stop eating and breathing

Zainab was barely 8-9 months old when she started facing these symptoms. After weeks of consulting various doctors, we went for a genetic test. My Zainab would wail with each prick of the needle. Her diagnosis came as a shock. And when Zunaira’s test reports showed the same result, I froze in fear. To wake up each day with the thought that you can lose your kids any day now…this is a plight I cannot even explain in words”, cries the heartbroken father.

The one-time cure for SMA is Zolgensma. It costs $2.1 mn (approx Rs. 16 – Rs. 18 crores). To save both the kids, they’ll have to arrange Rs. 32 crores.

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Your kindness & generosity will give them their children back

Mr. Chaudhary, who worked as an interior designer, is even struggling to afford his bread and butter due to the pandemic. The father’s entire life savings are being used up for the kids’ physiotherapy, which is just a temporary treatment. 

The sisters’ health is deteriorating with each passing day and the golden window for Zolgensma will be closed once they both turn 2 years old. Given their circumstances and time restrictions, they have no choice but to ask for donations. Your contribution, no matter how big or small, will bring them one step closer to the life-saving medicine. 

“Our lives were so blissful, Mashallah! But today, every second of every hour, my wife and I are crippled with fear and guilt. Our innocent babies are slowly walking towards death. Our Eid was full of tears. Every Namaz I offer, I ask Allah to spare my daughters’ life. To everyone who is reading our story, I ask for your kindness and support”
Ashfaque Chaudhary

 

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