You kept cheering on Ishani on her way to Zolgensma - Thank you!

By: Khushi Gohil

Published On: May 10, 2022

 

It was hard for me to believe in miracles until June of 2021 when Ishani became one of the hundred lucky kids to get the $2.1 million shot of ZOLGENSMA free of charge!

Ishani’s arrival into our little family was such a big deal for us that my wife and I thought her delayed milestones weren’t an indication of something grave. No parent can imagine any harm befalling their kid. Since genetic testing is not a norm in India, unlike in western countries like USA and Canada, it never occurred to us that our girl could use a genetic test, until she started showing signs of inactivity. 

By the age of 1, we were expecting our baby to grab, crawl, and babble. Instead, her hands and legs felt like a rag doll’s and she could no longer keep her body straight while sitting. After consulting with multiple pediatricians, we were asked to get Ishani tested. That’s when we finally learned that our child’s body was lacking a crucial gene responsible for providing muscle and nerve cells with the strength to perform motor neuron tasks. She had Spinal Muscle Atrophy! A deadly genetic disease that affects 1 in 10000 babies around the globe and is the #1 global cause of infant mortality due to genetic diseases.  

As if this wasn’t shocking enough for us, we were told that the only cure for Ishani’s condition was the world’s costliest medicine - Novartis’ Rs 16 crore ZOLGENSMA. Coming from a middle-class background, this amount seemed impossible for us. Another pinch was the fact that children above the age of 2 are not eligible for Zolgensma. Ishani was already 16 months old when we found out that Rs 16 crore was the amount we had to raise. 

My wife and I spent sleepless days after that. In the mornings we took Ishani to physiotherapy sessions, test centers, and hospitals, and in the night, we took turns watching over Ishani and helped her change positions in her sleep. The muscles in Ishani’s body were wasting every day! She could neither hold her neck nor sit straight. All she could do was lie down and look at us. 

Impact Guru made its way into our lives when we were searching the internet for potential donors and NGOs. Seeing the number of SMA cases on Impact Guru and their partnership with CureSMA Foundation made us believe that we were not alone in our battle. We launched our fundraiser with the kind staff’s help and also enrolled for Novartis’ Global Managed Access Program 2021. 

The wait was long and there were bad days too. That’s when the kindness of Impact Guru donors offered us the hope we were looking for. 200+ Impact Guru donors stood strong with us during these tough days and also when Ishani was shortlisted for GMAP 2021.

Post-Zolgensma, it’s as if my Ishani was born once again. Her physiotherapists are also happy to see her progress. She can now move her limbs and move her neck sideways. Instead of teary eyes, she now sports a smile and is ever excited to show off her moves to us! And it is only because of your donations that Ishani can continue with the crucial physiotherapy sessions from experts on SMA rehabilitation!

Patience is truly the biggest virtue, but when you have a community of people cheering on you, waiting becomes less lonesome. Thank you Impact Guru donors for being our allies on this testing journey. 

 

  - Abhishek Verma, Father of Ishani 

 

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