Divaa Uthkarsha: Diana Awardee’s Project Surya empowers kids with Type 1 diabetes

(July 23, 2023) When the wheels of the world came to a screeching halt in 2020, people saw themselves adapt to changes that the pandemic brought with itself. Amid the uncertainty and fear, a family in Bengaluru found that their 9-year-old son Surya has Type 1 diabetes. The news left his 12-year-old sister Divaa Uthkarsha shell shocked. “I had no idea what Type 1 diabetes was. My first reaction was he is just a child, how can he get Type 1 diabetes? I was shocked at my brother’s diagnosis and my lack of awareness on the chronic condition,” Divaa tells Global Indian. It was this knowledge deficit that prompted her to start Project Surya in 2021 to help create awareness and provide assistance to underprivileged children living with Type 1 diabetes. The initiative won her the Diana Award 2023. “It was a moment of pride because I have been putting my heart and soul into Project Surya. It is an inspiration and motivation to work harder and help more people and save more lives,” adds the 15-year-old.

Divaa Uthkarsha is the founder of Project Surya

When life turned upside down

In 2020, Divaa’s life took a significant turn when her younger brother was diagnosed with Type 1 diabetes, a condition where the body stops producing insulin. Fortunately, their doctor parents provided valuable support, guiding her to comprehend the complexities of the illness. The family as a collective took time to adjust to the new reality. “Eventually within a few months, he became independent and could manage himself,” adds the teenager who accompanied her brother on all doctor visits. “I would ask them all sorts of questions and read the manuals and diet chart in detail to understand the subject. Previously, I thought diabetes only affected adults.” Together, the family embarked on a journey of lifestyle changes, altering their diets and habits to accommodate Surya’s needs. “It isn’t just a lifestyle change but also takes a toll on mental health.”

Having witnessed the challenges firsthand, Divaa gained a profound insight into the resources required and the considerable expenses associated with managing Type 1 diabetes. less privileged children lacking access to essential resources, knowledge, and proper healthcare facilities. This prompted her to contemplate the plight of the less privileged kids lacking access to essential resources, knowledge, and proper healthcare facilities. Motivated by her experiences, she founded Project Surya in June 2021, aiming to improve the quality of life for underprivileged Type 1 diabetic children residing in Karnataka.

The beginning of Project Surya

Upon joining the Future Leaders Program by 1M1B, which aims to cultivate one million young leaders impacting one billion people, Divaa embarked on her journey of conceptualising Project Surya. “After identifying our problem statement and target audience, we started working on our plan of action. We came up with solutions that were very effective, sustainable, and impacted Type 1 diabetic children in a significant way,” adds the National Public School student.

Her journey in developing Project Surya involved a meticulous process of gathering insights through 30 interviews with key stakeholders, such as doctors, dieticians, and Type 1 diabetic children, alongside conducting over 500 surveys involving teenagers and ASHA workers. “It was through Samatvam Endocrinology For Science and Welfare Trust that we conducted online sessions, awareness workshops, Q & A sessions, and interactive counselling sessions with the help of an endocrinologist and raised awareness about Type 1 diabetes in a concise and scientific manner, covering essential aspects such as dietary considerations, the importance of exercise, and adjustments to insulin dosage when eating outside.” Divaa discovered that many teenagers and ASHA workers lacked awareness and had misconceptions, often confusing Type 1 diabetes with general diabetes affecting older individuals.” However, the sessions conducted by Project Surya helped dispel myths and equip them with the knowledge to manage diabetes effectively.”

Crowdfunding and Samatvam – the helplines

Project Surya has adopted crowdfunding as its approach, successfully raising ₹1,50,000 till now. “Additionally, we are receiving $5000 from a corporate based in the US. We are also in talks with corporates for grants and CSR funding,” reveals the teenager. The initiative aims to support underprivileged children with Type 1 diabetes by donating both funds and insulin syringes to Samatvam, who then distributes them.

Despite government healthcare facilities not providing free insulin, Divaa, and her team stepped in to offer low-cost insulins to these children through Samatavam. Their goal is to raise more funds to provide insulin pens, a less painful alternative to syringes, further enhancing the quality of life for these young patients.

Despite being passionate about Project Surya, many questioned her credibility initially owing to her age. “The major stakeholders that I pitched my project to initially didn’t believe me. As I was only 13, many thought that this was some school project that I would get over within a few weeks. But I had to convince them how passionate I am about the cause.” Fundraising, too, posed difficulties as the appreciation for the project did not always translate into donations. “Initially not many people showed up at fundraising events but then we were successful when almost 8000 people were in attendance. Right now, we are looking at accelerating the funding of the project.”

Throughout the two-year journey of Project Surya, Divaa has experienced both successes and setbacks, but she has come to realise the impact that even a small step can have on someone’s life. A passionate individual who enjoys playing basketball and engaging in debates, she firmly believes in seizing every opportunity that comes her way.

The impact

With the vision of making a significant impact, Project Surya took a deliberate approach, focusing on one-on-one interactions and targeting a smaller support group of 100 diabetic families over the last two years. “Directly, we have impacted 150 children and indirectly, we have impacted so many people as these children educated other children and families, thus creating a ripple effect,” adds Divaa. To raise awareness about Type 1 diabetes among the masses, the initiative organized rallies, school sessions, and engaged with ASHA workers. The result was far-reaching, impacting over 2000 students through sessions held in seven schools, and creating a Domino effect of awareness as volunteers initiated drives in their schools and ASHA workers spread the word in their community. Passionate about the cause, Divaa has actively advocated for insulin tax bans and the inclusion of Type 1 diabetes in the Disabilities Act, furthering her commitment to creating a positive change.

Looking towards greater sustainability, Divaa envisions implementing an “adopt a child” plan as a funding option for Project Surya, where individuals can commit to supporting a child’s insulin needs for a specified period, ranging from 5 to 10 years or until the child reaches adulthood. Alongside, she plans to secure additional funds from corporates and continue fundraising efforts. “We want to provide insulin pens and more effective diabetes management resources to these kids because the resources they currently have are limited and painful.”

With 95,600 cases of Type 1 diabetes affecting children under 14 years of age in India, Project Surya is determined to make a positive impact on these young lives. “From creating awareness where people under what Type 1 diabetes is, its symptoms, and the lifestyle changes they can make to keep it under check, we also focus on the mental health aspect where we talk about the stigma surrounding diabetes. The right approach and information can go a long way. And that’s what we are doing,” she signs off.

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