Teera – SMA Warrior

Part 1:

Looking up to welcoming Teera got us through the pandemic; our long wait came to an end as we welcomed our little bundle of joy in the August of 2020. Our girl was brave, right from the very start. I vividly remember her crying out so loudly during her birth that we could hear her outside in the visitors’ room. Little did I know back then that her story was destined to be heard.

She was comparatively taller than a normal child would be; the spark in those eyes could reach out to anybody’s heart, and that’s why we decided to name her Teera (sharp and focused as an arrow). While there was no bound to our happiness, it wasn’t until two months into Teera’s birth that our life entirely changed.

We were at the clinic for Teera’s scheduled vaccination; unlike the last time, Teera didn’t resist the shots. She had no reflexes – not even a single tear, and that’s when our doctor got concerned and advised us to get a neurological exam done for Teera. Teera was diagnosed with SMA type 1. Her body lacked the proteins that would keep her nerve cells alive, causing rapid muscle deterioration and body function loss.

We were a complete mess for the first two days after our doctors broke to us that Teera’s life expectancy was around two years. They advised us to keep her comfortable and let go of her when the time came. A condition like this was unheard of in our entire family; we were stuck in a helpless loop, not knowing whom to approach. Amidst all the chaos, it was only one thing that we were certain of; “we as parents couldn’t lose hope and let go of our little one”.

Priyanka and I gathered our courage and began researching SMA. The gene replacement therapy for treating SMA type one was only available in the US. It would cost us 16 crores and an additional tax of about six crores to import the shot to India. Coming from a middle-class family, it was impossible for us to gather such a huge amount. Teera had to be given the medicine at the earliest; the uphill battle against SMA became harder with every passing day.

Part 2:

We started to gather information about various crowdfunding platforms around the world that other parents with kids fighting SMA used, and that’s how we came upon Impact Guru. We reached out to the team and spelled our entire story, and they gave us a detailed explanation of their entire fundraising procedure. We didn’t have much time and hence started our Instagram campaign right away and people got to know about Teera’s condition. The PM’s office and the state CMO also recommended a waiver of the importing tax on the shot as our story came into the light. With the generous contributions of many known and unknown personalities, we gathered the full amount in 80 days, and Teera got her therapy on the 26th of February.

I can’t thank our digital family enough, who have been checking up on Teera’s condition ever since and we are truly grateful to everyone that has contributed, both money and their time, and helped us on this journey. You’ve not only given Teera a new life but also given a new lease on life for both Priyanka and me. Things wouldn’t have been so smooth if it weren’t for Teera’s valor and cooperation; she would close her eyes and tilt her head forward when we had to disconnect her ventilator tube for regular cleaning or suctioning. She has been recovering well, and we are looking forward to her physiotherapy sessions. I can’t wait for the day when she will grab my hand and ask me to hold her as she takes her first steps.

While we were successful in telling our story, many families in rural and small-town India have helplessly dealt with this situation. Despite the high ratio of patients, SMA in India is often undiscussed. These children are scientifically proven to have the brightest minds, and we wish to do our part to save these bright minds by bringing more light to this terrible genetic disorder. I’m proud of our little girl who has not only fought this battle with the utmost gallantry, but has brought a new purpose to our lives. This is just the beginning of our battle against SMA, as we continue to provide help and guidance to any child suffering from SMA that asks for it.