Child specialist’s special child got a new life post-Zolgensma

By: Krisha Gohil, Suraj Pandey

Published On: May 10, 2022

 

As a child specialist, I’ve often had many parents consider me second to God because they believed it ultimately was in my hands to save their children. I’ve always shouldered that responsibility for countless children out of duty and empathy. But even in my wildest dreams, I hadn’t imagined myself to someday be in the shoes of a parent fighting to save their child. The last two years have been a rollercoaster of emotions for my family. If it were not for the undying support of Impact Guru donors, we wouldn’t have made it this far.

Siyona’s arrival in my little family made my wife and I feel complete. Our child’s chubby cheeks and an endearing personality were enough to put our anxieties for her health at ease. Though, that was the illusion of Spinal Muscular Atrophy. Only after a few months following Siyona’s birth did we realize she was losing her motor neuron functions. 

She couldn’t move her neck like other babies. Very soon, she started facing difficulties in breathing too. Her limbs and body felt like that of a soft toy. Every time we picked her up, we would have to support her limbs too. Knowing these symptoms all too well, I didn’t spare a lot of time before getting Siyona tested. My worst fears came true the day I learned that my child was the 1 in 10k babies to be diagnosed with the baby killer disease - Spinal Muscular Atrophy Type 1.  

Spinal Muscular Atrophy (SMA) is a deadly genetic disorder caused by a missing gene responsible for carrying out motor neuron functions. Without a shot of Rs 16 crore Zolgensma, my little one was fated to lose her involuntary muscle movements too!

We flew her out to SMA Foundation, Poland in the hopes of better treatment. However, it all boiled down to whether she could get the gene therapy drug before turning 2. After researching crowdfunding options, we chose Impact Guru’s platform owing to its successful SMA cases, 100% transparency, and tax-free benefits. 

Not soon did we start our journey, Siyona won the hearts of 6574 Impact Guru donors. Together, you helped us raise more than Rs 92 lakh within a span of months! Thanks to your consistent support, when our little one won Zolgensma free of cost in the Global Manage Access Program, we were able to carry out the process smoothly. She got her shot on July 15, 2021. 

Today, post-Zolgensma, my child has had a steady recovery. She can now move her head to meet our eyes! More milestones await her as she carries on with her treatment in Poland. 

Thank you Impact Guru donors! You stood by Siyona like a rock right from the launch of the campaign to this date after she has been administered Zolgensma. Your kindness has saved countless lives. You are indeed the ones second to God!

 

  - Dr Shrestha, Siyona’s father.

 

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