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bet fair casino,luckia portugal s.a,free spins no deposit required,Rs 16 CR stands between SMA baby Yuvaan & Zolgensma- world’s costliest medicine


Updated: May 28, 2021 4:10:13 pm

He has the brightest eyes but does he have the brightest future at this given time?

1.5 years old Yuvaan suffers from a cruel illness, with a cure that holds the record for the world’s most expensive drug- $2.1 million (at least Rs 16 crore).

Yuvaan can neither sit, nor swallow. His vocal muscles are wasting. He is losing his ability to talk. It has been over a month since we heard him say ‘ma’. He tries, but ends up crying with pain and frustration,” says Rupali Ramtekkar, Yuvaan’s mom.

Yuvaan was diagnosed with SMA – Type 1 in November 2020. Since then, the sweet and jolly boy has been losing his motor functions rapidly. With a risk of multiple organ failures, the little boy’s heart will soon give away. 

Yuvaan is missing one of the most important proteins from his DNA- the component that controls the muscle functions in the body. Muscle functions are required for every little movement in the body, right from blinking one’s eye, to picking up a glass of water. However, in Spinal Muscular Atrophy, the muscles shrink and the organs stop losing their function. That is what is plaguing our Yuvaan,” says the worried father, Amit Ramtekkar.

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Today, one in 10,000 children are born with this disease and are pushed into the jaws of death since their very birth. SMA patients undergo a genetic test, those whose body can recreate a protein that can help muscle function are qualified for gene therapy with Zolgensma- the wonder drug that’s priced at $2.1 million. 

Luckily, Yuvaan’s body is capable of reproducing a sister protein that can stop further muscle atrophy and help regenerate the connection between the central nervous system and the muscles- thereby, curing SMA. 1 dose of Zolgensma, that has to be imported from the United States of America can help Yuvaan make up all the baby milestones he has missed out on. The world’s costliest medicine can save Yuvaan’s life. 

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Even if we toiled all our lives, we still wouldn’t be able to raise Rs. 16 crores all alone. With the little ornaments we have and the small-scale business we run on labour charges, we can’t afford  to get Zolgensma.  That’s why we are fundraising to save our son on” Say Yuvaan’s parents with tears in their eyes. 

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Rupali and Amit can’t raise $2.1 million without the unanimous generosity of people around the globe. This is where we can contribute to reverse Yuvaan’s fate into a happy one. Even donation can serve as a saving grace for Yuvaan. 

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The total cost of Zolgensma in INR is subject to change as per exchange rate fluctuation.


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