Pune family’s first girl child in 25 years hangs on the hope of a $2.1 million drug


In Pune, Sourabh and Sneha parent a curious, adorable child named Vedika. But after a few blissful months with her, mysterious symptoms urged them to rush her to their pediatrician. At 4 months, Vedika was unable to hold her neck. Falling sideways, and unable to hold herself upright, baby steps didn’t seem like an option for little Vedika.

“Are these delayed milestones?” the parents asked themselves, but what followed was a heart wrenching discovery. They learnt that a deadly genetic disease coursed through Vedika’s body which would lead every muscle in her body to fail. Before she turns 2, before she even begins her life, this rare disease could be the last of her.

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“We had never even heard of spinal muscular atrophy (SMA) type 1 before this. When the doctor asked us to put Vedika through a series of tests to confirm this condition, I was terrified. As a mother, I felt the pain pierce her as I saw the nurse draw 10ml blood from her. Even in that moment, all her body could manage was to flinch. My baby couldn’t even cry aloud. That’s when I realized how deadly SMA really is.”

Degeneration

Vedika’s condition, which occurs due to a single missing gene, results in progressive muscle wasting. Simply put, every muscle in her body will stop functioning and ultimately, the organs supported by it. Her hands, legs and torso have already lost their function. Vedika can neither roll over by herself, sit, stand or crawl. Without the treatment on time, even her cries will be silenced as her vocal cords weaken. Involuntary actions like swallowing, breathing and her heart pumping blood will cease, making even living difficult for Vedika. Barely a year old, Vedika risks suffering that would scare even adults. 

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For her mother, who watches this degeneration first-hand, the pain is unbearable, “A child of Vedika’s age would hug her mother and embrace her. But for my Vedika…” 

No matter whether the child is happy, fearful or frustrated, she can’t ever reach out to her mother or crawl into her lap. She can only cry. Muffled cries.  As SMA does not affect her cognitive function, Vedika is still a sharp, perceptive and expressive child. But as SMA withers away her physical body, it also strains the mother-child relationship. 

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Hope: The World’s Most Expensive Drug

“Vedika is the first girl child in our family in 25 years. When she was born, we imagined a lifetime of dreams for her. But now, we are racing the clock to even keep her alive,” adds the father. The only cure for Vedika’s degenerative condition is Zolgensma, currently known as the world’s most expensive drug, priced at $2.1 million (Rs 17-18 crore). It can only be administered to children under 2 years or weighing under 13.5 kilograms.

“We have been given only a few months to arrange this hefty sum. We are just a middle-class family. We can never afford Rs 17-18 crore. But without this drug, there will be almost nothing left for Vedika.

Our only hope now is to appeal to ask you for help. My child’s life is ticking away every second, and you are our last ray of hope.”

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The father’s appeal comes in light of Vedika’s rapidly advancing condition. In a few months, it will be too late for their little girl. We urge you to come to their assistance and contribute to save Vedika. Every bit of help, no matter how much will help the child get her life-saving drug and lead a long and full life with her parents.



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