Gujarat Exclusive > National-World > Kid suffering from SMA dies in Bikaner before parents could arrange Rs 16 cr for treatment

Kid suffering from SMA dies in Bikaner before parents could arrange Rs 16 cr for treatment

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The toddler from Bikaner, Noor Fatima, who was suffering from a rare disease and required Rs 16 crore for treatment passed away on Tuesday morning.

The daughter of a painter, Zeeshan Ahmed, Noor was suffering from spinal muscular atrophy (SMA) type-1. For treatment, she needed Zolgensma, a drug produced in the United States that costs Rs 16 crore.

Noor woke up in the wee hours of Tuesday and had milk. But after a few hours when the parents tried to wake up her, she was not breathing. The parents took her to the hospital where she was declared “brought dead”.

Recently, when a boy from Hyderabad suffering from exactly the same disease received Rs 16 crore through crowdfunding, the family of Noor also became hopeful of overcoming the financial challenges to save the child.

Noor was gradually losing her strength and weight and the lower part of her body lost movement. The doctors had told the parents to procure the injection which could have saved her life.

High hope

Zeeshan earned Rs 10,000-15,000 per month and was unable to meet the medical expenses. But he never lost hope. After an appeal made by the parents of Noor and friends, support started pouring in and Rs 40 lakh was collected through crowdfunding. But, Noor succumbed to the rare disease.

Several Bollywood stars, singer Raja Hasan, Toshi Sabri, former Miss Asia Pacific Anupama Soni had appealed to donate generously for the child.

Will return money donated for Noor

Following the death of Noor, his father said he will return the money to the donors who were kind enough to help him in his endeavour to save the toddler.

“I will return the money to the donors who were very kind to the baby girl. Each person who donated the money will be informed about the demise and the money would be returned. We received Rs 30 lakh in my and my brother’s account and Rs 10 lakh was collected by various organisations. The money received would be sent back to the donor in their account from where the money was transferred,” said Zeeshan Ahmed.

 

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