It was a usual tiring Monday evening (2014), on way back home from work… looking at bright red lights of the slow moving traffic with my thumping fast music in car, my phone rang an unknown number, I picked the call & heard ‘Hi, I am Prasanna Shirol’ can I talk to you now Deepa? Good time? The next 40 min of the call I was moved and touched by how a love of a father to his daughter transcend hope & future to many.
Prasanna quit his years of career to support and attend his only cute daughter ‘Nidhi Shirol’, Nidhi suffers from a rarest genetic disorder called Pompe, she breaths through a support of portable ventilator and suction machine tugged behind her wheelchair. Sharadha aunty, her mother goes to her college everyday and both daughter & mother found ways to get things done when dad is away traveling. While the medical bills pilled to be on a ventilator 24 hrs, enzyme therapy which costs few lakhs and need Rs 1.5 crore annually, which they manage to get from sponsorship/charity.
For Prasanna and Sharada it has been a relentless fight to keep their precious one alive. I quote from one of the article published, “Why should we give up when she’s fighting? Every time she goes to hospital, she exercises and finds a nerve for the injection. She has never cribbed. Many people have told me that I am fighting nature. But when she wants to live, how can we sit back?”
Organization for Rare Diseases India (ORDI) was founded basis these exuberant journey Prasanna had gone through for his loving daughter. When talking to Prasanna one can never tell he is from Business Management background and has acquired depth of knowledge on genomics and biology of diseases just to start supporting Nidhi. In midst of leading Doctors and genomics scientist, Prasanna represents India in various conferences and meetings internationally to develop a strong network of international Parent and Rare disease groups. ORDI Officially launched on February 18, 2014, their vision is to make rare diseases diagnosable and treatable just like other diseases such as diabetes, cancer etc. in India. ORDI identifies the grand challenges faced by the rare diseases community in India and is committed to systematically and holistically addressing those challenges.
I have known Prasanna for 2yrs now, on our first call he mentioned about the concept 7000 RARE DISEASES, 7000 PEOPLE RUNNING. Today I was part of the pride stride…, ‘Race for 7’ kick started with huge supporters who ran 7000 meters from St Joseph high grounds to Cubbon park, every runners bib carried the name of the rare disease encouraging each one of them to spread awareness, to empower patients and their families. Matching strides with rare disease patients ensured they are not running a losing race but everyone coming together for winning strides.
I was diagnosed with rare neuro-muscular condition call ‘Spinal Muscular Atrophy’ (SMA), eating away my muscle strength gradually over the years but what replaced every weakness was my parents dreams and support for me. I personally experience everything that my folks had to do from my childhood till date, my gratitude to them is every breath I take, every single day. I see the family of Shirol share the same strength and smiles as we do 🙂 living hopes for many such…