TJay: Streaming Signals of a Better Life
My dear, dear Tejas,
Hope you are having a great time at home. I am writing this letter to you from New Delhi, where we are doing a clinical trial of Xaant. I so look forward to coming home soon, and giving you and Mamunu a big, tight hug.
The Infosys team called and asked if I could pen a letter to you. The very idea of composing words that could capture the depth of my feelings for you was an emotionally overwhelming challenge. Tejas, my baba, I hold a fervent wish, a prayer that someday you will read my words and understand the sheer magnitude of the blessing you are in my life.
The first time I held you, a pink, 3.6 kg miracle, I knew my life had changed forever. You, my darling boy, had seizures on the second day of your birth, and I remember wondering what those tiny jerks were. It’s been 12 whole years that you have braved your condition, and the courage you have summoned through every battle with your seizure episodes have taught me the true meaning of grit and resilience.
I couldn’t let fate alone decide the course of your life, my dear boy. Don’t I have a role too?Raji Borthakur + Pictures of Raji and Tejas
I am so sorry that you have to go through so much pain and suffering in your life. The slow zoning out, the strange twisting and throwing of your limbs, and your gradual descent into unconsciousness were terrifying. I am so sorry I never had an inkling of the severity of what epilepsy really does to a person, until I came face to face with the seriousness of what you were going through. I'll never forget the day, sitting at my computer, frustration getting the better of me, when I typed out, 'What is epilepsy?' on Google, hoping to find an answer to help you through your pain.
The journey was real
We were told your epilepsy stemmed from an injury to your brain during birth. Deta (dad) and I ran from pillar to post, cross country, seeking a proper explanation to your problem, consulting some of the top specialists in the country. But there seemed to be no right answer.
Your condition remained poorly diagnosed and untreated for a very long time - long enough to impact your growth and development. The seizures progressed from simple jerks in the initial days of your life to prolonged statuses that just wouldn’t stop on their own, requiring emergency hospital care every time you had an attack.
Dr. Shiva Kumar Shamarao of Manipal Hospital says the impact of epilepsy on the quality of life is huge, because with every episode of seizure, patients become hypoxic, and this has an impact on growth and development. For an individual, losing complete control of the body and mind, as it happens during epileptic attacks, can be potentially dangerous.
Many don’t receive proper treatment. Either they don’t know about antiepileptic drugs, or are burdened by cultural beliefs, healthcare limitations, and then there is a shortage of trained professionals.
There is always a solution
The day you slipped into a coma after a severe attack, I knew I had to do something more, something that could help us understand and anticipate your seizures. Just after you were released from the hospital, one of your doctor’s declared to me, “You have done whatever you can, now learn to live with this.” “This” meaning your life-threatening seizures and implying that we now ought to let fate take over your life.
I couldn’t let fate alone decide the course of your life, my dear boy. Don’t I have a role too?
Despite my scarce knowledge of the clinical background of epilepsy or the complexities of entrepreneurship, all I wanted was to find a way to predict your seizures in advance, to spare you from the uncertainty and fear, to prove that technology could be a source of hope for those dealing with the unpredictability of epilepsy.
The journey into the world of neuroscience was daunting. Convincing doctors that a worried mother could have a real solution to something as complex as epilepsy wasn't easy, but I refused to give up. The road was paved with doubts and skepticism, especially since I came from a non-medical background. Yet, your love, my dear Tejas, fueled my determination. After 3 and a half years of obsessive research on epilepsy, documenting different aspects of it, validating and cross verifying different nuggets of information, an idea came to me – my eureka moment!
Slowly and steadily as I worked on building TJay, I understood you were sent to my life to be my teacher, to help me define the trajectory of our lives in a purposeful manner.Raji Borthakur
Epilepsy is caused by abnormal electric discharges in the brain, which can be seen in Electroencephalograms (EEG). EEGs are complex devices and not suitable for everyday wear. We needed something simpler for you. I had this naïve thought that if epilepsy is characterized by electrical signals, could we not pick up such signals from the brain, no matter how faint they are, from whichever part of the body they traveled to? Maybe tap the signals in a peripheral region instead of the source? How difficult would it be to identify some of the tell-tale changes in the body (I figured out there ARE such signs for many types of epilepsies) that precedes a seizure, and could there be a way then to inform caregivers and doctors of a likely event? Wouldn’t such an alert mechanism help abort an attack before it could do any damage or even save a life?
And there it was, TJay, our precious creation, born out of the need to find a solution to your problem. It's an AI-powered smart wearable with a sensor hub that can detect when an epileptic seizure might be on the horizon. How does it do that? Well, it keeps a close eye on your autonomic nervous system (ANS). By tracking the ANS at the palmar region, TJay can predict when a seizure might happen, giving us precious time to prepare or to seek help.
A Journey with many faces
But it wasn't just our triumphs that shaped this journey; it was also the struggles, the moments of doubt, and the times when I questioned my sanity and capabilities. Alongside your and TJay's growth, I grew as a person, learning to embrace the unknown and believing that everything that is happening in our lives is happening for a reason.
Looking back, it's been an incredible journey.
With TJay, we hope to make the lives of people with epilepsy safer and better. Our goal is also to help doctors provide faster and accurate diagnosis. Our aim is to make specialty healthcare accessible to the remotest places in the country and we aspire to close the treatment gap in epilepsy by at least 40% in the next 5 years from the existing 90%.
The journey so far would not have been possible without the incredible support of the people I work with, my team, and of course your precious sister Mamunu, your beloved Deta, and your ever doting grandmas, Junu Aina and Minu Aita. I cannot not acknowledge the contribution of my alma mater, Infosys, for making me the process-oriented and detailed professional I am today. In 2019, Infosys Foundation also supported TJay with the Aarohan Awards, which came to us at a time when we were struggling for research funds.
And Tejas, you were and will always be the heart and soul of my life’s journey.
Once, when you were going through your worst days, in a state mixed with rage, confusion and helplessness, I questioned why the Goddess gave you to me.
I now no longer ask her that question.
Slowly and steadily as I worked on building TJay, I understood you were sent to my life to be my teacher, to help me define the trajectory of our lives in a purposeful manner. It is just because of you, others like you will have a better shot at living with their epileptic conditions. You helped me understand the pain, trauma, and isolation that people with epilepsy go through, and thus inspired in me a zeal to come up with a potential solution that could ease their plight. My life would have been most superficial and devoid of the love, peace and calmness that fills me today as I work on building the foundations of a powerful technology for all of humanity.
Accepting you, my special boy, in your special state, my heart is filled with love and gratitude. I accept the dear Goddess’ gift of you with grace and humility.
I love you, Tejas. Thank you for coming to my life.