I feel like I am in the movie Eat Pray Love. India: where eating is a pleasurable ritual to welcome a visitor like me, where praying is sometimes the only thing left when you suffer a bleed without treatment, and where love abounds when we bring donated factor and funding from Save One Life. It’s Day 2, and I am in Trivandrum, on the very southern border, right on the Arabian Sea. A thundercloud is rolling in, and I expect to be deluged with a monsoon soon.
I’m here as part of a site visit and check up for our nonprofit Save One Life. This is a child sponsorship program for those with hemophilia in developing countries. Despite all our best efforts and our lobbying initiatives, we simply cannot wait for governments to one day buy factor for its bleeding disorder patients: children are dying and we can do something about it right now. Our approach at Save One Life is to match sponsors in developed countries with impoverished children and adults in need in developing countries. I’ve seen it over and over in our 11 partner countries: $20 a month can actually change a life for the better.
India was our first country to enroll, and is our biggest country partner, with 315 beneficiaries. I’m trying to visit as many as possible. I’ll be visiting about 10 cities in 17 days, logging over 19,700 miles by plane, auto and even overnight train. Totally worth it.
I arrived Thursday night after a smooth 15 hours flight to Delhi, the capital, and was met warmly by longtime friend Usha Parthasarathy, mother of an adult with hemophilia, and our Save One Life liaison in India. Usha worked for many years with the Hemophilia Federation (India) and seems to know everyone. She is dedicated, tireless and totally passionate about helping to improve the conditions of those with hemophilia in India.
We were so fortunate to be able to stay, free of charge, at the lovely home of the mother-in-law of Dr. Shipra Kaicker from Brooklyn, New York, whom I met at our fundraiser in NYC earlier this year. She sponsors a little boy in Delhi (whom I met) and her generous offer helps us to save money. She also visits Delhi and helps patients there medically. There are so many angels like her and Usha in this community, I feel like I live in heaven!
On Friday we visited Lions Hospital, and were greeted by my dear friend Indira Venkataraman, a 78-year-old who also seems tireless in her quest to help her patients. Indira’s adult son with hemophilia had just died earlier this year, but despite her grief, Indira has not nor will ever quit on her patients. She is always in the clinic, always pouring out her love and concern to the boys.
With us was Krish, a 36-year-old with hemophilia from Chennai, who has become an important link to all beneficiaries. Krish is the first international employee of Save One Life—and I foresee the day when we are employing people with hemophilia in many countries to run our growing programs. Krish has a full time job in advertising and marketing, but spends many nights each week, working up till midnight, to help us compile reports on individual patients, ensuring funds are distributed and coaching chapters on how to implement the program. I was thrilled to meet him, and was so impressed with his intelligence, education and above all, dedication. He is so passionate about Save One Life! His enthusiasm really gave me a huge energy boost and affirmed that all our hard work to make Save One Life reach the poorest of the poor on this earth has been effective.
A group of patients gathered to meet us, among them the child I sponsor, Suraj Tanti. As this is my third trip to India, it was delightful to see him again. The initial awkwardness of meeting from years past has melted away to a feeling of reunion, joyful and enthusiastic. Usha, Krish, Indira and I spent the afternoon meeting with each family individually, taking photos, chatting and answering any questions they had. Yes, it’s very time consuming—a combination of doing social work, journalism and administration. But what a joy, to hear how sponsorship funds have helped keep a young boy in school, or helped a family get medical treatment.
One of the boys I recognized instantly was Jittender. I met him first in 2005, and he had a haunted look to him. We immediately got him a sponsor, but the sponsor eventually couldn’t keep up the payments. Jittender lost his sponsorship for a while. This really bothered me. Recently, our own chairperson, Chris Lamb, sponsored him, and Jittender this day looked great, and happy. He has put on weight, his joints look good and best of all, he is going to tourism school! He has a future.
After all the interviews, it was time to return to the house, change gears and then go to the Annual General Meeting of the Hemophilia Federation. Delhi is about to host the Commonwealth Games, and I have never seen so much construction! We maneuvered through rush hour traffic, and arrived at the event location. It was wonderful to see the heads of India’s 65 chapters, many of whom I have met over the past 10 years, in India and overseas. It was such a happy reunion! Dr. Maganti, Raghu, Siddhartha, Dr. Devila, Dr. Suresh, Dr. Ranjani and Dr. Ghosh, Rashid… I only wished I could have stayed longer.
After an opening by Mr. Roy Chowdury, the chairman, I gave an overview to all the chapters about Save One Life. While many chapters are now enrolled with us, eventually we’d like all chapters enrolled. I presented the statistics: 315 beneficiaries enrolled, which means we are transferring over $60,000 dollars to India annually. At least 85% of this goes directly to families; the rest goes to the chapter to help offset administrative costs. Patients get money for food and transportation (always a major problem in developing countries). Krish also gave a report on how the program is implemented, how rigidly accountability and transparency are maintained (meaning, Save One Life is only for those nonprofits that can uphold our very high standards). Afterwards, Krish said he was deluged with requests to join by the Indian chapters. That’s good news, but first, we realized, we must get the 200 children on our waiting list sponsored. You can see their photos and names on our website at www.saveonelife.net.
One of my greatest thrills was to finally meet in person someone I’ve been corresponding with for months about solving problems. A beautiful young Indian girl rushed over to meet me… Priyanka, a brilliant university student with a major in psychology, who also happens to have VWD. We had been planning to meet for a long time, which was finally here. We both felt like it was a dream, come true. And it was! Priyanka hopes to one day work with HFI when her studies are complete.
Our first full day in India was busy and satisfying. We had a late night meal with “Magi” (Mom), Dr. Shipra’s mother-in-law, and crashed… only to be awoken at 2 am with monstrous pipes being dropped, one by one by one, just overhead as Delhi prepared for another day of laying the foundation of a huge highway. Delhi… the city that never sleeps!
Okay… must run to dinner with colleagues’….more to come including photos in a bit! Please check in later! Remember this is a 19 day odyssey and I will be posting amazing photos, stories and hopefully videos about my journey through India…See this photo of a preview and check back in a day or so…