Save One Life

Holiday Time in New York City

Laurie Kelley December 13, 2010

I was honored to attend the New York City Chapter’s annual meeting and holiday party. This is a relatively new chapter and wow, have they come out strong and swinging! No wonder with people like Shari Bender and Melissa Penn at the helm.

Dr. Christopher Walsh was the first speaker and gave an informative talk about new developments in hemophilia treatment. Dr. Walsh is director of the Hemophilia Treatment Center at Mt. Sinai Medical Center and a gene therapy expert. It was a relief to hear that there are viable gene therapy trials still ongoing, though to most of us, these have been overshadowed by trials for long-acting factor. I can tell you that many families are not even aware that gene therapy trials are still happening.

Dr. Walsh said, “It’s incredible how many companies are working on treatments for hemophilia.” Treatment will get better, he added. His talk covered regular hemophilia, inhibitors, and treatment for hepatitis C, still a devastating disease for those who contracted it in the 1980s. Dr. Walsh stressed that with abundant treatment and excellent health care in this country that “Bleeding is not an option.” He recommended that people check out www.clinicaltrials.gov for more information about gene therapy and trials on long acting factor and other treatment developments.

I presented the work done by Save One Life and how we support over 650 children and adults with hemophilia in poverty in 11 countries around the world. In this world, bleeding is the only option due to lack of treatment, which we are trying to ease by weekly factor donations to 50 countries. In response to my talk, the NYC Hemophilia Chapter passed around a container and we raised $373 on the spot! This is more than enough to support Nitish, a young man with hemophilia who lives in poverty in Nepal and whom the Chapter sponsors. Many people also kindly brought vitamins for me to bring on my next journey overseas, as many children become anemic from frequent and untreated bleeds.(Photo: friends Kathy Didier of Octapharma and Kim Phelan of Coalition for Hemophilia B)

The highlight of the day was a visit by Santa Claus, who distributed gifts to all the kids.

Congratulations to the NYC Hemophilia Chapter for its great advocacy and community work, and I thank them for allowing me to share in the celebration. New York City–one of our nation’s greatest–and the New York City Hemophilia Chapter–strong and young, looking to transform the lives of many, here at home, and in far away lands.

(Photo: Bleeding Disorder Resource Network displays Save One Life brochures, and sponsors 20 children!)

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!

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…

Namaste from New York!

Laurie Kelley May 24, 2010

Last Tuesday I dusted off my salwar kameez outfit from Pakistan, hopped on a plane with executive director Martha Hopewell of Save One Life, our child sponsorship nonprofit, and went to New York City for a wonderful fundraiser called “Bollywood Chic,” hosted in the art studio of Hunt Slonem.

The studio takes your breath away: cavernous at 15,000 sf, and filled from ceiling to floor with framed art, statues, and even a museum quality collection of butterflies that was stunning. In the center of the studio: bird cages filled with colorful macaws and doves. Hunt’s specialty is painting birds; you can see his famed parrots on a new Tiffany set of serving ware. The birds are raucous when not being fawned over; they demand attention by screeching. This added an exotic flavor to the evening!

How did we snag the goodwill of an artist of Hunt’s calibre? Through board member Tara Reddi, who is vice president of the Marlborough Gallery in New York, and has a nephew with hemophilia in India.

Guests arrived around 6:30 and stayed till 9, sampling some wonderful Indian-style food, and wine at our bar, and listening to Bollywood soundtrack. Guests could wander freely throughout the studio, which is subdivided into different rooms, each with a theme. The Lincoln room is filled with Hunt’s portraits of Lincoln in many colors. Another room is filled top to bottom with framed paintings of rabbits. Another room is filled with Greek or Italian statues. Another room contained a massive round table and filled with candles, looking like an invitation to a seance! Guests were really intrigued by the decor!

We were pleased to have with us Dr. Ranjan Kulkarni from the Nasik Chapter of the Indian Federation of Hemophilia. She is our program partner there, and has enrolled many children with hemophilia in Save One Life. She just happened to be visiting in New Jersey, which worked out perfectly! The fundraiser gave her a chance to meet two other doctors and sponsors: Dr. Lucy and Dr. Shipra, both attired in lovely Indian dresses!

Save One Life now sponsors over 550 children in nine countries, giving them funding that they would normally never receive. Funding is used for transportation to clinic, to buy medicine, and to pay school fees. The nonprofits that administer the program–our program partners–check in regularly with the children, to ensure they are doing well. So more than just a charity, we are guaranteeing these kids get seen, are known and are helped.

Our deepest thanks to Hunt Slonem for generously allowing us the privilege and pleasure to spend an evening at his studio. Thanks to Tara Reddi for organizing this marvelous event, which required a lot of hard work. Thanks to all the guests who showed up despite the dreary weather, many of whom were friends and patrons of Tara’s and Hunt, and who supported the fundraiser. And thanks to my friends at NHF, whom I was so happy to see present!

Many thanks to two companies who helped underwrite the event: CSL Behring and Inspiration Biopharmaceuticals. All proceeds of the event will go towards our India program, where the bulk of our beneficiaries are located. I’ll be traveling to India in September to check on our program and will be sure to keep everyone posted. Namaste!

For more information or to sponsor a child in need: www.SaveOneLife.net
Also see: www.cslbehring.com, www.inspirationbio.com, www.marlboroughgallery.com

Diamonds in the Slums

Laurie Kelley July 6, 2009

To me, there’s nothing more rewarding or satisfying than to travel through clogged urban streets and alleys, or jostling out on half finished roads, or sometimes no roads, in the broiling heat to visit hemophilia families in their homes. It’s like hunting for elusive diamonds. Amidst the trash, slums, poverty, sweltering humidity, you sometimes get an unexpected surprise that makes it all worthwhile. We had three of these happen to us in the Dominican Republic following camp last week.

Last Tuesday we visited a family right in Santo Domingo, the capital and the oldest city in the Americas. That’s right: this is where Columbus came four times during his voyages, to the island of Hispaniola. Dominicans are a beautiful blend of European, indigenous people, Africans (brought as slaves) and Spanish. Santo Domingo is home to the first hospital in the Americas, featured here, now in ruins.

I think we saw all these nationalities in the Torrres family. We met all three children: Alexander, Bryan, and Victor. Alexander and Victor had been at camp with us all week– but no one knew they were brothers! They have different last names, and this underscored the need to get the national registry more precise. The foundation FAHEM needs to be able to know that two children are brothers, not from their names, but also from their shared address.

The family lives in a two room dwelling that they rent. Rent is 40% of their $95 a month income. Try to think how to live on that with three kids with hemophilia! It boggles the mind. Only the father works. The young mother stays home, though there is little to do when there are only two rooms. She spends all her time with the children, shuttling them back and forth to the hospital. We are enrolling all three children in Save One Life.

On Wednesday, we started our day by visiting the de Jesus family, in the barrio La Cruz. It was about a 20 minute ride outside the capital. Rural poverty is quite different than urban poverty. In some ways it’s worse, because you lack plumbing and water. But then, there is space, more quiet, more nature. Damaris lives in such a place: a two room house with a tin roof that cooked the kids inside like a microwave. Haydee de Garcia, founder of FAHEM, the Dominican hemophilia society, and I were sweating by the time we hiked up the little hill to see her. With us was Haydee’s nephew Luiggi, who served as our translator.

No refrigerator, no bathroom, no running water. And yet, her tiny house was as clean as could be, with flowers on the small kitchen table, and the floor swept. The children were clean, and Damaris was carefully groomed. I was very impressed. Wilmer fussed, and I bent over to whisper in his ear. Maybe he can hear; he calmed down quickly and his eyes grew wide. My first job out of college in 1980 was working with mentally and physically handicapped children and adults, so I am used to being with and caring for these children. I’m not shocked and I don’t do pity, but I can empathize. Both boys have hemophilia. To bring Wilmer to physical therapy each week, Damaris has to carry him in her arms on the public bus, and then walk. As a result of his disability, Wilmer’s back is rigid and his limbs taut. It cannot be easy at all to bring him. I tried to hold him and it was nearly impossible. And she knows she has a lifetime of this ahead of her.

When we entered the house, it was allegedly to see Darling, Damaris’s five year old. What we did not expect was that her other son, Wilmer, age 18 months, had something wrong with him. Damaris told us that just in February, her baby with hemophilia had a spontaneous head bleed. She rushed him to the hospital, but he was in a coma by the time she got there. Now he was permanently brain damaged. He is blind and she does not know how much he hears. We were saddened by this tragic situation in front of us: Damaris and her husband earn only a little, have no luxuries at all, not even a fan to keep her baby cool. Inside the small house, the temperature was about 90 degrees, and there was no way to keep away the abundant and voracious mosquitoes that nibbled on our ankles.

But Damaris never complained and was humbly grateful when we told her we would find sponsorships for both boys, giving her an additional $40 a month. We first decided they needed a fan more than anything, to keep the baby cool. And we gave her the money on the spot. With many hugs and smiles, we left for the next family.

Further out into the country, we came to the De la Rosa’s house, a lovely but modest home on a dirt road. Three big boys with hemophilia: Anderson, Alexander and Anthony. Their sister, Angelina, sat in on the visit. The boys are all in their late teens and look fantastic. No joint damage, well developed musculature. It got me wondering. These handsome guys didn’t look quite–normal.

As we did the intake interview for Save One Life, I started asking about their extended family. One sister died in childbirth. Uncontrolled bleeding. Another died from her period. These boys don’t get joint bleeds but get a lot of nosebleeds. Haydee and I looked at each other: could they have von Willebrand instead of hemophilia?

We asked them to get tested at once so we can get their diagnosis straight. We have held off getting them sponsorships until this is done. But all in all, I was thrilled that we made the visit. They were diagnosed about 10 years ago, and could very well be misdiagnosed. Though the mother said that factor VIII concentrate “works” on the boys, it could well be that a product was used that contains von Willebrand factor.

A surprise: they don’t have hemophilia but VWD!

I wish we had time to visit every patient, in every country. Home visits are the single most important thing I can do, and I love doing them. In these three visits we learned something new, something important, and something the national foundation needs to know. And the stories we hear make us humbled, grateful and better people. As Mother Theresa once said, “The poor have much to teach us.”

See photos from the entire trip here.

Great Book I Just Read: Krakatoa by Simon Winchester
One of the world’s worst natural disasters took place on Monday, August 27, 1883, when the small island of Krakatoa in the Sunda Strait near Indonesia exploded and destroyed itself. The blast– believed to be the loudest sound ever known–was heard thousands of miles away and killed over 36,000.

Author Simon Winchester is a geologist by education and trade, and now is an engaging writer. The book is not about a disaster, as much as it is about geology, and the science of volcanoes and the earth, which I found to be absolutely riveting. I never knew about this and I cannot wait to learn more about Mother Earth and from where this self-destruction originates.

You’ll learn about subduction and tectonic plates, about how only recently did scientists agree that the earth’s plates are moving! You’ll learn about early trade in East Asia, and about Indonesia in the 1800s. Winchester even ventures to say that the devastation, and the poor handling of it by the Dutch, left the door open for radical Islam to invite itself in. Indonesia is now the most populous Islamic country on Earth. How nature changes politics.

I loved this book, but I can critique it on two things: first, Winchester has a choppy style, and the book swings like a pendulum from this topic to that. Sometimes it seems that the eruption is only a blip, a thing standing in the way of his discourse on geology. The second, most disappointingly, is that although 36,000 died, you don’t hear about any of their stories. They are not as important as the rock, the plates, the volcanoes. I kept waiting to read about the people, what happened to the people? Hardly a word. A chapter about the victims—who were they? Who survived and how?– would complete this amazing story. Three stars.