India

India Day 9: Hyderabad to Calcutta

Laurie Kelley October 3, 2010

Usha and I flew in last night to Calcutta, the “City of Joy,” location of the famous Patrick Swayze movie by the same name, and of course, Mother Theresa’s mission. We arrived quite late at night after a short flight from Hyderabad. Let me backtrack and finish up with Hyderabad. Camp was on Wednesday, and on Thursday, we awoke at 4: 30 am–Usha, Dr. Prasad and I drove to Hyderabad, a 5 hour ride.

We stopped around 9 at a restaurant and had some breakfast: eggs and toast for me, and delicious Indian tea, which while not spicy has some sort of zing to it. Really delicious and milky. Then back in the car, which was a luxurious ride, as the car seems to be new and is covered with terrycloth towels. We passed long stretches of fields, and many villages, all seemingly the same. Buffalo pounded the shoulders, and various roadside shops zipped past.

Entering Hyderabad, it got busier and busier, and then crowded. There are hundreds and thousands of motorbikes. The streets were pulsating with them. Huge buildings, large billboards: Hyderabad is one happening place. We drove to the Nazim’s Institute of Medical Services, where the local chapter heads and doctors awaited us outside. Inside, patients were waiting for Usha and me in the hallway, some eager, some confused. There was quite a bit of nervous energy: while I was speaking to one set of parents, someone would interrupt, start a new conversation, introduce me to someone else… quite confusing! Everyone seemed angling and positioning for attention. And why not? Everyone needs financial assistance and factor, and those we can provide.

All of these patients were really lovely to interview. When I met an obviously Muslim family, I said “Assalam a laikum,” and their eyes lit up in surprise. Just a smile and “Namaste” was enough to get everyone connected. The team served that lovely Indian tea; the only thing is, the dainty Indians serve it in a thimble size cup, while we Americans, especially this American, love to swig it down by the 12 ounces Dunkin’ Donuts size! Appreciating the cultural differences, they served me two cups.

Meeting them one by one, I was able to get the baby smiling, the little boys to relax, and the teens to loosen up. Most families earn about $25 a week, nothing. They really need help. All they want is a chance, a shot at life: the opportunity to go to college, be educated and get a job. The families all want and need help; the appeal in their eyes was plain. Who can help them? Who cares about impoverished patients with hemophilia? If we in the developed countries have no pity in our hearts, and turn away from them, who will help them? I always think, what if that were my precious baby with hemophilia? I would pray day and night for someone to help. I wanted to touch those boys’ souls, change their lives… come back again soon. Who are they? What do they feel? What can we do for them?

Back at the house, we sat outside on the veranda before dinner in the dusk, to relax. We heard the mosque call to prayers. I thought, here we are Christian and Hindu with the Muslim prayer calling out over the city… beautiful… like kindred spirits united against the common enemy of poverty.

On Friday morning, we had a rare day off. We decided to tour the city. We drove to the old section, to a busy bazaar, and I loved it! I hopped out of our car, dodged the speeding cars and motorbikes and snapped some photos. Usha and I checked out a temple of the goddess of wealth, Lakshmi. We visited a dress shop and I had fun selecting a few Indian salwar kameezes—less than $15 an outfit. I was feeling out of place with my Western clothes. We stopped for lunch at a nice restaurant, where I had dhosa and coconut: delicious! Back to the house, pack and we were ready for our flight to Calcutta, which is where I am now.

Upon arrival at 10:30 pm last night, we were greeted our colleagues, Mr. Oja and Sudip Chatterlee, members of the executive board of the Calcutta Chapter. The relatively cool 76 degrees last night belied a brutally hot day today.

I haven’t ever seen much of Calcutta though it was my second visit. I visited in 2005 on another whirlwind visit of India, and only stayed 24 hours. I longed to see more of it, as I only know one part of it and probably not representative. I awoke this morning, opened my hotel window and was greeted by a big green, polluted pond, where workers were, at 7 am, already vigorously beating sheets and towels against rocks; I wondered if my sheets would end up there today?

Calcutta is huge and grimy, and even the paved streets seemed to perpetually throw up a cloud of dirt. Yet I see a lot of progress in the five years since I was last here.

The Calcutta Chapter was only a stone’s throw away, and we zipped off there to met with patients this morning. We interviewed 10 patients in five hours, and I must say, I saw some really great things, and some heartbreaking things.

First the great things: Calcutta was one of our first cities to enroll in Save One Life, and now I can see the payoff. The boys we enrolled eight years ago are now finished with college and getting jobs. They are paying for their factor. Some are even thinking of going back to school for further degrees! Many of them are quite handsome and came to the center to see me, well dressed. For example, Nazbul is now a tailor, even though he is only 18. With the Save One Life money from sponsor Eric Hill, president of BioRx, he bought two electric sewing machines, and earns $30 a week, which is way above what most of our beneficiaries are earning. Previously, he considered himself very poor, but now he is sustaining himself and even buys factor.

But we also met little Mokhesh, age 14 but so slim and tiny. He had chest pains, and he writhed in pain a lot during the interview. He and his father had traveled 5 and a half hours to come here.
We gladly paid for their transportation, and concerned, we arranged for him to have an infusion, as I brought with me donated factor. Without this donation, though, he would have to wait for hours to get the cryo or plasma into him. We had a long talk with the chapter about why they don’t get any donated factor. All over India chapters are finagling to get donations: why not Calcutta? The team didn’t seem to know where to turn to for donations (despite that I run Project SHARE and it’s right on the internet). I think after this visit, we will have them more aware of how to get factor. We also saw a huge need for physical therapy. The boys all have contractures and very weakened musculoskeletal systems. Usha began thinking of ways in which to get programs started.

Above all, I saw connection and compassion. Tanuka, the administrator of Save One Life for the chapter, was our kind of gal—she knew every single patient by name, and all their relevant information. No one else there had the connection to patients like her. With this detail, she could ask better questions of them, and could determine their needs best. When one young man, 29, said he sat around watching TV all day, she said pretty much that’s it—no school, no work, no Save One Life funds. He was given a deadline by which to get his life going again, despite his obvious poverty and disabilities.

One boy who made a strong impression on us was Toten, 21, who lives three hours away. He was very quiet during the interview, until the end. Then he shared with us his dream: He’s attending electrical engineering school, and once he is successful, he wants to help others, to give back. That’s one of the first times I had heard any of our beneficiaries say that, and it pleased us. We feel that with our blessings, we can give back. Poverty becomes less a socioeconomic level, and instead becomes an attitude. If Toten, who earns about $1 a day can give back someday, then we all can.

Next stop Durgapur, a four hour drive!

India Day 6: Water and Sun

Laurie Kelley September 30, 2010

Thursday, September 30, 2010 Hyderabad
Resting at the home of Dr. Prasad in Hyderabad, 10 pm. We got up early today, at 5 am, readied ourselves, then hit the road by 6 am. Off to Hyderabad. It was a 5-6 hour ride, but it seemed to go by fast. We all dozed at some point, as we were so tired from the day before. We passed long stretches of fields, and many villages, all blurring by. Buffalo pounded the shoulders, trucks with various loads lurched by and various roadside shops zipped past.

But let me fill you in on yesterday, which was amazing! Still in Vijayawada, Usha, Krish and I awoke, had breakfast, then jaunted off to a theme park with 45 Indian kids with hemophilia. I had just met these kids one-by-one the day before in more formal circumstances, at the clinic of Dr. Maganti Prasad, the dedicated orthopedic surgeon who cares for them and doubles as a hematologist when needed. All his hard work for the past 20 years showing today: the children, all who have had limited supplies of factor in their lives, were able to attuned the theme park without wheelchairs or crutches, and for today be normal little boys. And what a day!

The sun scorched the grounds of the park; it was 90 degrees and climbing, and humid. We arrived just as the yellow bus pulled up, the kids all packed tightly in. Out they poured, each one wearing the polo shirt with the society logo on it. They were excited, smiling, energetic. So were we!

It took a while to get everyone registered, and we pretty much had the whole park to ourselves. This is a beautiful place with a Thailand theme to it: indeed it’s called Haii Land. Colorful, larger than life, with plenty of rides and an entire water park. The kids headed for the water park first. I became less and less strange to them, as they forgot about our differences and focused on the fun. Many kids changed into bathing suits and waded in: none of the kids knows how to swim, as they never have access to open water. They got more daring as each one took a step in, and pretty soon everyone was splashing and playing in the water. Down the slide flew one little boy, then another! Looking about, you almost couldn’t tell anyone had hemophilia!

“Wave Pool!” we heard the loudspeaker shout! And the kids ran over to the artificial wave pool, which was wonderful! Colorful, enticing, and exciting: the lagoon featured a wave machine and the kids played here the most. Even Krish, our Save One Life program assistant, went in and later told me it was his first time in the water like this! Even the moms changed out of their saris and into modest swimsuits and took a dive. The sheer joy of the water brought out the child in everyone.

“Rain dance!” and everyone headed over to a pavilion that spewed water overhead, with very loud, pulsating Indian music. Soon the kids were dancing in the “rain.” After 40 minutes, lunch, which featured delicious Indian dishes. The kids got their second wind and then headed to the mechanical rides: Carousel, train, flying elephants and go-carts. In the midst of it all, the sky broke loose with a passing thundershower. Everyone was drenched but no one was dampened! The moms ran for cover and we all crowded into an arcade until the storm passed. It was a good time for a factor check—about eight boys were having bleeds. Dr. Prasad’s experienced technicians had come, and gave the boys their infusions among the video games.

The sun returned with much cooler air, though I was already sunburned. The boys requested the Pirate Ship ride, and everyone piled on. It was thrilling for them! They screamed and waved their hands while I snapped over 750 photos that day.

It was well passed our time to leave, but… Dr. Prasad allowed one more ride: the parachutes. Even he and I jumped on and we laughed like kids ourselves. What a great time! Everyone was completely spent when the day was done. We had snacks, and I received a beautiful gift from everyone. But it couldn’t even compare with the gift of simply being with them.

It’s hard for those in developed countries to even imagine the lives of some of these kids: try “Slumdog Millionaire” and throw in a chronic disease that cripples, that keeps you in agony all night long, that can kill. A day like this, in a posh, immaculate amusement park, with good friend, good food, and thrilling rides—the joy cannot even be measured, unless we can somehow measure the wattage of all the smiles.

India Day 2: Slumdogs to WHO?

Laurie Kelley September 28, 2010

Day 2 – Saturday, September 25, 2010

Today we started with a hearty breakfast and then headed for the slums of Delhi to meet with two families. Usha, Krish and I met with our colleague Indira, president of the Delhi chapter, HFI, who would guide us. But first a bit of sightseeing. Krish had never before been to Delhi! It’s a marvelous city, alternatively orderly and clean, then also, like most big cities, chaotic, noisy and dirty. We toured the India Gate, a stately monument to the fallen Indian soldiers of several wars.

The first family we visited was in a ramshackle riverside slum, sheltered underneath a soaring highway. A sea of blue plastic tarp draping the tops of the many shanties rippled. Parking on the roadside, we stepped gingerly on a beaten path littered with dog, pig and human excrement, and plastic bags, garbage and paper. A ghastly smell rose from the heavily polluted river, causing Krish to cover his mouth with a handkerchief. Up ahead we could see small children scuttling about, a few teens, and many women: bathing the children under an open spigot by the riverside, hanging laundry, cooking over open fires or carrying supplies home. The dwellings are cement blocks, covered by corrugated tin sheets and covered by the blue tarp to prevent rain from dripping in. An enormous sow rolled over in the mud to allow her numerous piglets to suckle while strange looking stray dogs sauntered by, short-haired, wary, thin, and dirty.

I generate a lot of curious stares, but you know what? If you smile and say “Namaste,” putting your hands together in prayer (the traditional greeting) almost everyone smiles. One young girl—so hard to believe she lives there—not only smiled but also spoke English to me. The narrow, crooked alleys eventually bring us to Indu’s house. She is a tiny woman, maybe only 4.5 feet high, 80 pounds, who is the single mother of two boys, Surender and Sikander. I had met Surender in 2005 during my last visit. He never smiled, and had a traumatized look about him. I never forgot him after that first visit. He still had this look, like he could never quite figure out what was happening and who to trust. His younger brother is the opposite. He warmed up quickly and smiles abounded.

The family was happy to have us come, and also shy. Their home? One room, only 8 feet by 6 feet. I think it is to date the smallest dwelling I have ever entered. I couldn’t stand up all the way. One small square cut into the concrete allowed a rusty fan; that was all the ventilation. A plank served as a bed, covered with a blanket. I could barely fit myself: yet all three live there. Surender is suffering from severe synovitis in his left knee, and he lifted his pant leg to show me; his knee is hugely deformed. It was also hot; he was having an active bleed. We gave some gifts, snapped some photos and chatted about the boys.

When it was time to leave, the family walked us back to the road, with me holding hands with little Sikander. To the left, and covering the length of the entire slum, ironically, is the World Health Organization’s massive, modern, city-block size building. WHO of course is responsible for monitoring and improving the health conditions of developing countries. Just one hundred feet away, its gleaming windows, satellite dishes and massive height dwarfed the pitiful slum. A pretty employee scurried into the building, ignoring us and the ill-dressed impoverished people with us. To add insult to injury, the guards yelled at our driver for daring to park in their parking spot, which of course was empty, save us! Welcome to the world of institutionalized development.

We journeyed on to the next home, where my sponsored child lives. This is my third trip to see Suraj Tanti and his family. I first met them in 2001 and we have maintained a wonderful relationship since. The father, Anil, writes to me several times a year, keeping me updated with the children’s progress, and sending their photos. There are three kids: Suraj (19, but who looks about 14)), Chanda (14) and Shashi (12). Their mother Anita, ever smiling, was also present. Shashi inside the 10 x 10 ft dwelling

We ambled down the broken cement path to their home, populated by random goats, and lined with open run offs, through which ran dirty water and sewage. Despite living in a slum, the Tanti family keeps itself immaculately clean. I actually knew some of the way to their house, and recognized the familiar cement walls, wire fence and neighborhood. Their home is also a one room concrete dwelling, with tin roof and nothing inside but a hard board to serve as a bed— no mattress to ease throbbing joints— and one chair. That’s it. It’s the size of a closet.

Since this was my third trip, and since we’ve maintained contact through the years, all shyness has melted away and we are now very comfortable with one another. “How are your children?” Suraj asked in perfect English. That made me happy! Shashi piped in, “And Jak?” (our terrier) We hauled out the photo albums they keep under the bed, and looked through all the family photos I have sent them through the years.

Shahsi was having a bleed, but never complained. I left factor with them, about $10,000 worth (equal to over ten years salary for Anil), as I know the father is highly responsible. A local doctor can administer when needed. This saves them all a very long trip to the hospital. We then took a short walk to the little shop where Anita sells candy, small cakes and pens. It earns next to nothing; Save One Life sponsorships really help keep them going.

Krish videotapes my sponsored India family

We had a bittersweet good-bye: I was so happy to have visited, but we knew it would be some time before I returned. Indians normally do not hug in public, but we made some exceptions for the American guest!

We relaxed a bit back at the house, and took lunch with Magi, and her adult daughter. All the food is delicious, including the wonderful staple roti (bread), and there is nothing like Indian desserts—all sweet and milk-based. The family’s hospitality puts a great face to India.

After such a day, we were not done still: Usha and I packed up, parted with many good-byes, and headed out to catch the 6:00 flight to Trivandrum, on the south western tip of the sub-continent. We flew for four hours, an easy flight, arriving at 10:00 pm. Tropical breezes greeted us, along with Joe, the tall, handsome son of George Tharakan, a man with hemophilia and one of the founders of the Hemophilia Federation. Off to the hotel for a long night’s sleep.

India is an amazing country with huge potential. By all rights it could be a superpower, given its young and increasingly well- educated people, which is one of its best resources. But it’s hampered also by its huge population, much of which lives under the poverty line, and by a government that has other priorities. We’re seeing progress in hemophilia, at the government level, and also at the patient level, through programs like Save One Life.

The India Odyssey Begins

Laurie Kelley September 26, 2010

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!

with SOL beneficiaries at Lions Hospital

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!

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…

Count Your Blessings… and Share Them

Laurie Kelley February 19, 2007

When you think you are going through tough times with hemophilia, I want you to think of some children I know. Born into poverty, suffering from hemophilia, these children usually have no access to factor, and endure horrific suffering. Some of these children are like Gorla. Gorla is ten-year-old boy from India with severe factor VIII deficiency. He is in the third grade and does miss school due to his disorder. He does not speak English. He has a 13-year-old brother, Yagna, who is also factor VIII deficient. His parents are agriculture laborers, who raise milk buffalos. The family income is only $2 a day.

Imagine trying to live on $2 a day. You can’t just pick up the phone and order factor when you are bleeding. You often cannot even go to the hospital for treatment; there is none. You simply endure it and suffer. Sometimes, you die.

We don’t want that to happen to Gorla. If you want, you can change his life. Save One Life is a nonprofit that provides individual sponsorships for boys like Gorla. In fact, Gorla himself is available to be sponsored!

I founded Save One Life six years ago. I sponsor 5 children with hemophilia personally, and see first-hand the difference it makes in their lives. We currently have almost 200 children in eight countries sponsored, but we have a long way to go. Would you like to help? Consider sponsoring a child in need, like Gorla. Just $20 a month could change his life, and enrich yours. Go to www.saveonelifeinc.org today, and share your blessings.