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Saturday, September 18, 2021

Bangalore-based parents need Rs 16 crore to save their daughter’s life!

1-year-old Khyati is racing against time. Without the world’s costliest drug, she may lose her battle between life and death


Updated: September 9, 2021 5:17:43 pm

 

It’s rightly said that a tiny drop can fill an entire ocean. With your heartfelt contributions, we’ve been able to raise Rs. 5 crores for my daughter. But, she needs Rs. 11 crore more. Without Zolgensma, her little heart can stop beating. I don’t want to lose my only daughter. Please help her reach the finish line”, pleads Khyati’s mother.

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What happened to Khyati?

Khyati, a beautiful little girl was born scorching through the Covid-19 pandemic. Her parents were extremely delighted to hold their newborn in their arms. They couldn’t wait for Khyati to grow up, someone who’d come running to hug their parents at her first sight. But, Khyati’s ill-fate doesn’t allow her to even move an inch without someone’s help. 

The bundle of joy hasn’t had the pleasure of a normal baby. Because she is suffering from Spinal Muscular Atrophy – Type 1. The said diagnosis earlier this year, shattered the hearts of Khyati’s parents in a million pieces.

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What is SMA-1 and how is it affecting Khyati?

Spinal muscular atrophy (SMA) is an inherited disease that affects nerves and muscles, causing muscles to become increasingly weak. It usually affects the infants. It can lead to death.

SMA-1 is a fatal disease. Due to SMA-1, Khyati cannot breathe, the most important function for any human to survive! This adorable girl needs to be on oxygen support (bi-pap) for a minimum of 18 hours each day. She cannot lift her neck or swallow her own spit. She cannot have food or move her arms to reach out to her favourite toys.

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What is her current situation?

If Khyati could speak, she would have filled her house with giggles. She would have called out “Mumma” and “Paapa”. But unfortunately, her parents haven’t been able to reap the feeling of parenting.

Instead, this 1-year-old has been in and out of the ICU several times. Today, she shudders at the sight of doctors and nurses that come next to her. She cannot fathom the pain of pointless needles that are constantly pricked on her delicate skin.

The doctors from Bangalore Baptist Hospital informed Khyati’s parents, “SMA-1 is 100% fatal. She needs to receive treatment before she turns 2.”

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How can the world’s costliest drug help?

This infant has faced multiple problems uptil now. But, there’s a silver lining. There’s a cure for Khyati’s grave illness. Through Gene therapy, Khyati can lead a normal life; Zolgensma, the world’s most expensive medicine exported from the US, can save Khyati’s life. One shot of this drug can give Khyati a new life.

But, the last hurdle that Khyati needs to jump across is the cost of Zolgensma. This medicine costs a whopping $2.1 million (Rs. 16 cr). For the middle class family of Nagumantri, it’s difficult to collect such a huge amount of money. But, it is not impossible. They are crying for your help. 

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Khyati can be saved but you are her last hope

With your generous donations, Khyati has been able to raise Rs. 5 crores. Surely, another Rs. 11 crores can help her afford treatment.

Khyati’s innocent eyes plead for help. If she could speak, she would tell you about her suffering. She doesn’t deserve a slow painful death. Every day, she is asking to be saved, to break free from the cage of SMA. Will you join hands and help her reach Zolgensma?

Please support and spread the word!

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Your kindness can save a life

Khyati has got everything she needs – loving parents, a life-saving treatment but all she is missing out on is your support. She needs your help. With your kindness and heartfelt donations, Khyati can live. Stand in unison for Khyati as she beats SMA-1. Your every donation will bring the little bundle of joy closer to Rs 16 crore!

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