By: Krisha Gohil, Kleio Bhagwati, Suraj Pandey
Published On: October 27, 2021
At two months, Mihir and Priyanka Kamat’s little one: Teera was diagnosed with Spinal Muscular Atrophy- Type1. A genetic disorder that pries on children with a missing gene protein responsible for muscle movements. Teera’s muscles were wasting every inch of her life. Rs 16 crore Zolgensma was her only shot to beat SMA but she was running out of time. Teera needed the wonder drug before her first birthday.
Her grey eyes, tinted cheeks, and curly locks won the hearts of 98541 Impact Guru donors worldwide! Teera Kamat is the first child on Impact Guru to get Rs 16 crore ZOLGENSMA. Teera’s success has opened multiple avnenues and discussions on genetic testing in India. After getting her shot on February 28, 2021, at 10:00 AM, Teera is catching up on the milestones she had missed.
We at Impact Guru have considered Teera our own. This is why, months after Zolgensma finally made it into Teera’s veins, Mrs Khusboo Jain - COO, Impact Guru visited Teera and had a chat with the super girl’s super parents.
Khushboo: Before we delve deeper into the heavy subject of SMA, can you take us back to the day little Teera was born?
Priyanka: Even though, I knew that I would be happy with either a girl/boy, I was hoping for a girl. I’ve always wanted one. In fact, I even had a clear picture of how she would look like. That’s why when I first saw Teera’s big grey eyes and her tinted cheeks, I remember wanting to pat myself on the back for being a mother to such a lovely girl.
Mihir adds laughing: When people asked which child was mine, I used to gladly say she’s the tallest and the noisiest one in the ward.
Khushboo: Ha Ha! Yes, Teera has really charmed the world and her donors with her infectious smile!
Khushboo: After Teera’s case succeeded on Impact Guru, she paved a way for the discussion around SMA and other severe genetic diseases. What were some of the earliest symptoms of SMA? Are there some symptoms that other potential SMA kids and parents may watch out for?
Priyanka: We first became cautious when Teera had two instances of breathlessness. Once while my mother was bathing her and another when it was late in the night. Her eyes had rolled up and she kept gasping for air. We had to rush her immediately to a nearby clinic. When her vitals were all normal, we were asked to consult with a neurologist. Unlike infants her age, Teera’s limbs were floppy and were tender, just like a soft toy’s.
Mihir: She wasn’t grabbing or moving her neck a lot too. The pacifier that we gave her would slip out of her mouth too because the muscles in her face were wasting. We were lucky that we got her tested at the onset of the symptoms. With SMA kids, time is of the essence. The 8-day wait for her testing and diagnosis was a long one, but we ensured that every day we would devote some time to research and read up about cases across the world.
Khushboo: Yes. You have always had a prudent approach throughout the journey. Within just 10 days of diagnosis, you reached out to so many people and companies. We are extremely grateful that Impact Guru was the platform that finally opened the doors for Teera’s cure.
Khushboo: Teera is the first SMA child in India to be diagnosed so earlier on and to successfully get ZOLGENSMA worth RS 16 CR on Impact Guru’s online platform. That too, within 3 months! How did it feel once you reached that goal?
Priyanka: Honestly, we didn’t have a minute to feel the joy, because we had to immediately begin preparing the paperwork for customs and taxes. The nearer we reached ZOLGENSMA, the more we forgot how to relax or celebrate. For us, getting past customs, payment, delivery, etc. was a never-ending process till Zolgensma was finally in Teera’s veins.
Mihir: Even the very day she got her shot, we couldn’t bat an eye. We kept our watch on her throughout the night. How could we have a sound sleep knowing that a Rs 16 crore drug was in our child’s veins! Now months post-ZOLGENSMA, with every wriggle of her fingers, we are finally able to enjoy and admire her milestones at peace.
Khusboo: Rs 16 crore in itself is not an ordinary amount, neither is Teera’s journey. Are there any extraordinary moments you would like to share with us?
Priyanka replies with a smile: Once, when we were in the hospital with Teera, a couple approached us and said that they wanted to help. Their own child was a cancer patient; everyone knows how costly cancer can be for a family’s pockets. Then too, that one act of kindness filled our hearts with so much hope. A lot of people have a stigma about asking for help, but this extraordinary journey has taught us that money doesn’t spoil relations, money is the reason why relationships begin. Teera has the support of Impact Guru donors around the globe now!
Mihir adds chuckling: Another extraordinary moment was when Teera’s story made it to the news after PM Modi waived off the customs on Zolgensma. Our champ really made history there.
Khushboo: With every first, come challenges never experienced before. What would your advice be to SMA families trying to raise Rs 16 cr for Zolgensma?
Priyanka: the power of social media has worked wonders for us. More than reaching out to influencers and celebs, we believed in reaching out to commoners. When one individual shares the news with 100 of their followers and personally asks them to donate for the cause, they bring more close friends into the cause. Another thing is approaching people on social media chats and answering their queries. People may donate and forget, but once you reply to their query and start a conversation, they become involved in your cause on a personal level. Every day I used to spend 3-4 hours replying to 500+ messages. On days when I couldn’t, I made sure to post an update.
Mihir: There is no one correct method to do it. Social media posts, banners, cold emails, reaching out to companies/celebs/politicians, etc. you must avail all the options in your reach and not give up for your child’s sake. On days when your strategy doesn’t work, have a plan-B on the go.
Khushboo: So how has the wonder drug affected your lives so far?
Mihir replies smiling: You’re seeing her right now, she’s looking wide-eyed at you and all of us. She was always a sharp child, but now, she can even demonstrate it by moving her fingers and turning her head to look at us. Now she nibbles on her pacifier and even changes its position in her mouth.
Priyanka replies with tears in her eyes: it’s not just her, but our lives too have been so positively influenced after Zolgensma. Throughout those three months - from diagnosis to infusion - SMA had really clouded our minds and lives. There were days where I would just look myself in the mirror and couldn’t meet Teera’s eyes. After Zolgensma, it feels like she has been born again and her real-life has just begun now. Everyone in our family can think about her future with us, rather than SMA, and the day it will snatch her away.
Khushboo: It has been Impact Guru’s honor to be a part of Teera’s journey. Her story has really proved to the world at large that kindness exists in abundance and it can save lives. Teera’s fight has come to a happy ending, but her fundraiser has opened a discussion about SMA that is bound to go on. As we get more SMA cases by the day, for us, our journey is only getting started!
Your support towards Teera’s fundraiser has not only impacted her life, but also the lives of her loved ones! With Teera’s journey ending, ours at Impact Guru has just begun! Today, Impact Guru has 40+ SMA cases. With donors like you, we are sure that children in India, who are suffering from SMA will soon get the recognition and care they deserve. Thank you so much for being a part of Teera’s fight!