When science meets empathy: Zain’s Changemaker Journey

This story was written by Zain and edited for length and clarity. 

In 2018, while at an event with my dad, my vision began to double uncontrollably. I was confused and disoriented, and as the doubling continued, I was unable to bear the mental ache. My body felt fatigued, and I fell to the ground. After almost four months of testing, I was diagnosed with Intermittent Exotropia, a rare medical disability that doubles my vision every two to three hours. It felt like this condition was taking away my ability to live a normal life. It deprived me of the ability to concentrate on my studies and my aspirations. In the face of absolute failure, as I was about to give up hope, I heard a voice: it was my mother, reminding me to look at the positive in every situation.

Now, three years later, after rehabilitation, I have realized that my temporary disability was a blessing in disguise. It enabled me to discover and express my unbridled passion in a way that resonated with others. I was able to persevere past the rut that my visual impediment had created in my life, and the support I received reminded me that my ultimate goal was to help other people by giving back to my community in a meaningful way.

My name is Zain S., and I am from Hyderabad, India. I’m a roboticist and artist who is sparked by cartoons, passionate about making fiction a reality, and driven to aid humanity through change-making. I love writing poetry and capturing beautiful moments through photography.

My first step towards cultivating a changemaker mindset occurred when I was five. I vividly remember my mother tirelessly taking care of household chores and her children. I noticed that because of this, she did not have any leisure time for herself. This observation prompted my budding changemaker conscience to proclaim to her that I would one day develop a robot that would take care of all her chores for her and for all the other mothers around the world. She used to call me her "little scientist”. That spark that I first felt towards helping my mother has since grown and set ablaze my passion for becoming a change-maker scientist.

In the summer of 2015, during my family vacation, I met one of my distant uncles for the very first time. I was shocked to learn that he was paralyzed, unable to even use a spoon. I empathized with him, knowing that it would be challenging to require assistance with every event in the day. He informed me that he once lived in a village and was forced to travel regularly to the city for his treatment, but this was often time-consuming, psychologically strenuous, and expensive, costing upwards of 11 lakh rupees. 

Meeting my uncle was the spark that led me to develop Neuro-ExoHeal in 2015. Although it began as a personal endeavor, I gradually created a team of five people through referrals and attending various competitions and events. We& have developed Neuro-ExoHeal ;to help patients with hand paralysis to experience a faster, more comfortable, and inexpensive rehabilitation process. We accomplish this process by combining robotics and neuroscience to retrain our patients’ brains.

While researching, we came across the concept of neuroplasticity, which is the idea that the brain’s neuroarchitecture has the ability to regenerate, thereby strengthening connections between parts of the brain that may have once been weak. Utilizing this, alongside my knowledge and experience previously developing affordable prosthetic robotic hands for amputees, we were able to create Neuro-ExoHeal. This device is divided into a sensory glove for the functional hand and an exoskeletal robotic glove for the paralyzed hand. When a movement is performed by the functional hand, the exoskeleton forces the paralyzed hand to mirror the same motion. This mirroring allows the mirror neuron to trick the brain into believing that the paralyzed hand is alright, forming new neural connections and reviving the paralyzed hand. 

By listening to and working directly with patients, we were able to empathize with their struggles and concerns. Then, we to developed a solution that enables patients to use Neuro-ExoHeal in their everyday lives in routine tasks such as picking up a glass of water, while simultaneously speeding up their recovery. Many patients, including my uncle, complained about traveling long distances regularly for their rehabilitation sessions. To address this, my team developed an accompanying app that acts as a means of communication between doctors and patients. The app enables a doctor to remotely guide and monitor the progress of their patients, thus allowing the patient to comfortably use the device at home. This feature has become especially relevant now during the pandemic.

It is incredibly meaningful to me that my uncle is able to use my product. After starting to use Neuro-ExoHeal, he said that he felt sensations in his paralyzed hand on the very first day, which is weeks, and even months, faster than he would have with traditional therapy. I witnessed him holding a spoon for the first time in what felt like forever. Similarly, another bedridden patient was able to finally sit upright without the assistance of another person. In this way, Neuro-ExoHeal and our dedicated team help paralyzed patients regain use of their hands, return to their daily tasks, and most importantly, restore their self-confidence. 

To further develop the exoskeletal design and undergo testing, my team and I have recently partnered with a reputable scientific research community in Hyderabad. We also organize monthly meetings where we consult with a panel of experts and local therapists to ensure that our product continues to be functional, relevant, and impactful.

I’m grateful to have such an amazing team, as through their dedicated work, we were able to make Neuro-ExoHeal feel like a second skin. We’re now developing a system that allows the glove to automatically adjust the level of assistance it provides based on the patient's progress. This drastically helps patients put in the right amount of effort into their recovery, which doctors have touted as fundamental to their patients' success. Over the last four years, we’ve conducted extensive tests under the guidance and supervision of physiotherapists and doctors from Saudi Arabia and India. Our initial examinations have revealed that Neuro-ExoHeal can help afflicted patients recover 30% faster than traditional remedies for a fraction of the cost.

I believe that everyone has the potential to use their abilities to benefit humanity. I believe that we should never stop asking questions because you never know what wonders lie in the answers you will receive. The things I have discovered and the relationships I have formed as a changemaker help me to recognize the plethora of emotions in the people around me, and to develop a mindset of togetherness that allows me to transcend and achieve. I have also gained a renewed appreciation for connection and support through my family, friends, and collaborators. Many potential changemakers give in to their fear of not being capable enough to create a significant difference. However, as has been proven to me time and time again, a small start can turn into a much larger movement.