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“She would tell many parents or other patients as well, whenever she met them in the hospital, ‘Don’t worry, look at me. See how I am breathing through a machine and going to school. You are alright.’ She was a motivator not only for me, but also other parents and other children.” - Prasanna Shirol, Co-founder, ORDI, talking about his daughter, Nidhi

Driven by a personal goal to uncover the diagnosis of his daughter Nidhi's rare disease, Prasanna Shirol co-founded the Organization for Rare Diseases India (ORDI). Nidhi's struggle with Pompe, a disease so rare it affects only a handful of individuals globally, prompted Prasanna to embark on a mission to address the absence of governmental support for rare diseases.

Prasanna's daughter, Nidhi

His daughter’s illness sent them on long search for answers, until she was finally diagnosed with rarest of rare diseases

In 1999, Prasanna Shirol and his wife were blessed with their daughter, Nidhi. However, joy turned to concern as Nidhi frequently suffered from pneumonia and displayed developmental delays. Unlike typical children, she never crawled. Desperate for answers, Prasanna and his wife visited 35-40 hospitals across India over 7 years, all in search of a diagnosis.

This period was marked by frustration and despair as they encountered countless dead ends. However, a breakthrough finally emerged in the 7th year, shedding light on Nidhi's condition - Pompe, a genetic condition in which a complex sugar called glycogen builds up in your body's cells

“The doctor told us that there was medicine available. Though it wouldn't reverse the damage that the condition had already caused, it would stop further deterioration. But just when we were supposed to go to Delhi to enquire about that drug, she got pneumonia again. The doctor said nothing could be done now, as she had reached the last level in terms of the capacity of her lungs. We had to get her a tracheostomy and put her on home ventilation.” - Prasanna Shirol

Amidst his personal struggles, he founded ORDI to bridge the financial gap for families of rare disease affected individuals

Prasanna recognized the challenges faced by parents, particularly in rural areas, dealing with the financial burden of diagnostic costs ranging from INR 30,000 to 1 lakh. Even after confirming a diagnosis, accessing treatment remains a daunting task, leaving many families with unresolved questions. 

In 2014, while caring for his daughter on ventilator support, Prasanna founded ORDI—a non-profit uniting voices for rare diseases in India, advocating policy changes and connecting patients with healthcare resources.

Though their selfless work has borne fruit and impacted countless lives, they are now burdened by their depleting resources

“I always correlate my daughter Nidhi with somebody else’s child. How can I make their life better? The first challenge was the lack of information with the parents. So we started India’s first Rare Disease Helpline, which has helped several thousands with timely diagnosis. Believe me because of one treatment to one patient, the lives of both the patient and their family changed for the better.” - Prasanna Shirol 

Their financial hurdles have now posed challenges to ORDI’s vision to help more patients fight and overcome rare diseases

Prasanna, who transitioned from a career at Sony to focus entirely on Nidhi's treatment, understands the emotional and financial toll on families dealing with rare diseases. But, despite their impactful work, the financial burden has strained ORDI's resources.

Looking ahead, ORDI envisions developing Centers of Excellence for Rare Diseases across major government hospitals, creating Rare Disease Care Coordination Centers, establishing Rare Homes for patients, promoting research, and continuing awareness campaigns. Additionally, ORDI seeks to provide proper diagnoses to thousands of undiagnosed patients, enabling them to access the necessary treatment and supportive care for a better life.

Nidhi lost her long battle against Pompe, but continues to inspire hope for support and help to children like her

On 9 November 2023, after an enduring 24-years, Prasanna's beloved daughter, Nidhi, succumbed to Pompe, the rare disease that had progressively weakened her muscles and her heart. In her lifetime, Nidhi embodied zeal and cheer, and served as an inspiration for her father's mission. She radiated optimism, displayed incredible strength, and battled her condition with unparalleled bravery. In the legacy she leaves within ORDI, her fervent wish remains — a hope that echoes through her story, that every child facing challenges like hers receives the help and support they truly need to live and thrive in this world. 

Motivated by a desire to help patients like Nidhi, I initiated the rare disease advocacy journey with ORDI, expanding support over a decade. However, financial constraints prevent us from assisting thousands of undiagnosed children, who often require critical supportive care. This includes necessities like ventilators, wheelchairs, and physiotherapy, posing financial challenges for parents. Our mission is to provide hope, ensuring timely diagnosis and support for as many patients as possible.   - Prasanna Shirol
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