Mumbai: Hemophilia Camp, “Children Free of Pain”

Welcome to Camp HemoSOL! 

Mumbai is a megacity
fringing the Indian Ocean, an ancient seaport that once beckoned to European
ships and sailors seeking to trade spices. It was called Bombay then, a major
city during colonial times, when India was the exotic jewel in England’s crown
of captured countries. Now it is the financial heart of India, the largest
democracy in the world, a fascinating contrast of topography, culture and quality
of life. Especially in Mumbai, where Slumdog-Millionaire shacks sprawl like
weeds alongside million-dollar highrises owned by billionaires. 

Traiditonal greeting
Mumbai: a city of contrasts




And here I am,
sleeping in a canvas tent on the outskirts, showering with chilly water each
morning, housed with about 40 boys with hemophilia who are attending Camp
“HemoSOL” for three days, organized by the Hemophilia Society Mumbai Chapter,
which cares for an astounding 1,250 persons with hemophilia. The air is sultry,
mosquitoes swarm at dusk, sweat seeps out of pores and dampens our clothes. But
the real atmosphere is joyous and electric, as these children generate megawatt
smiles and endless laughter. Camp is where they come together as friends, play,
swim, strategize at chess even while Anand, the reigning world champion and
from India, battles a Norwegian in Chennai, where I’ll be next weekend.

Chess is a national passion

We took a two-hour
tour through Mumbai’s clogged arteries and Indy-raceway-like highways to
finally arrive at the quiet and remote campground—really a 16-acre function
facility for weddings and retreats. Rustic by US-facility standards but very
nice for its purpose here, the grounds host tents, a dining hall, an activity
center (complete with a real, taxidermed Bengal tiger), swimming pool. The
tents are roomy, with electricity, a bathroom and even a TV. Behind the
facility snakes a river, to where goats clip-clop for a drink or bath.

Applauding winners of arts & crafts

Many of the campers
are enrolled with Save One Life, the nonprofit I founded to provide sponsorship
funds to individual children with hemophilia in developing countries. I’m
delighted to meet them again, three years after I last came. This is my fourth
trip to India, and I am definitely feeling at home. No longer am I disconcerted
by sights and sounds, which many of my friends call “an assault on the senses.”
No… this is India; brash and bold, busy and beautiful. Yes, there is a staggering
amount of poverty that challenges me literally. How to describe what I see? But
it is a country that has always welcomed me, and appreciated everything I have
ever tried to do to help.

Team Dream Killers create
an HTC out of art supplies

We donate a large
amount of factor to India each year, and now have over 500 children enrolled in
Save One Life. India is the country with the most number of our beneficiaries.
Why? Well, it has one of the highest populations of people with hemophilia; but
it is also a very productive and efficient hemophilia society— the Hemophilia
Federation (India). It was a good risk to launch our experimental program there
in 2001, and it has not disappointed us.
So back to the
Mumbai boys. I have rarely seen such a large group of boys with hemophilia
living in a developing country in such good shape. This is no doubt due to the
success of the Mumbai chapter in educating the boys and their families, and
providing good medical care, including factor. They stand tall, have good
joints and almost none walk with the crooked gait that see-saws the body.
Mumbai has a good chapter but also good hospitals, physicians and access to
factor.
Boys everywhere love pooltime
Judging the arts & crafts

The boys were all at
camp when I arrived Friday afternoon with Usha Parthasarathy, our Save One Life liaison, and Indira Nair, chair, mother of an adult
son with hemophilia, both mothers of grown sons with hemophilia. Also with us
was Balshiram Gadhave, who has
hemophilia, is president of the chapter and in many ways is a driving force
behind the society. We landed, settled into our tents, took a walk around the
grounds, met the boys, and had buffet lunch or moderately spicy rice, chicken
and roti (bread). Over the next few days we would have a self-infusion
workshop, arts and crafts as the boys in their teams each created a table top
hemophilia treatment center out of random items, swim time, food glorious food
(if you haven’t had authentic Indian cuisine you have not lived! Try the
desserts especially), a disco evening where we all danced the night away, a
talent show in which the boys put on excellent skits related to hemophilia, and
an awards ceremony! I received a beautiful award from the Society, and a card
signed by all the boys at camp. One sweetly wrote: “Madam Kelly, you always
mingle with the hemophilic boys lie cream with milk.”

The Save One Life kids at camp

And I was surprised
when they presented me and Balshiram with cakes for our birthdays! Mine was
October 28, his was that very day. Practical jokers all: my candles wouldn’t go
out no matter how hard I blew. They were trick candles!

The highlight of the
camp was a visit by distinguished visitors: Yogacharya Dr. Hansraj Yadav,
professor and Chair of Yoga at S.P. Jain Institute of Management and Research
and two colleagues. Dr. Yadav is a guru, who taught the mesmerized boys
breathing and physical techniques to relax themselves, to re-energize and to
redistribute energy throughout their bodies. Yoga can help with stress and pain
management. It was excellent and each child followed his lead as he
demonstrated 10 simple techniques.
HFI Logo and Slogan

Camp took place
during the Indian holiday Diwali, the festival of lights. At night streets are
lit up, with lamps or candles. At camp, we concluded Saturday night with
fireworks after our ceremonies. These exploding stars reflected in the beaming
faces of so many boys who sincerely expressed their appreciation to the
sponsors who give them $240 a year in sponsorship funds, to the volunteers who
give them factor and education about hemophilia and to one another. They are
all like brothers. They gazed at the fireworks, arms about each other,
comfortable, secure and with a bright future.

Happy Diwali!
Sudha with a Bengal tiger!
Usha and camp volunteers
Laurie with camper

Hindi temple
Prayers at a temple
Learning yoga from a yogi
Learning breathing techniques
Learning how to infuse
Success!
Interview for Save One Life
Happy Diwali!
Supplication
Indira and Usha on beach
Pooltime!

The India Odyssey Begins

Indira, Usha and Krish

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.

With “Magi,” our gracious host

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.

Krish supporting Andy Matthews’ blog!

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.

With Amit and mother

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.

Jittender

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.

With Priyanka

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…

Cartoon on Hemophilia


Why has no one thought of this before? A great educational and public relations cartoon from the Hemophilia Federation of India, with whom we do a lot of humanitarian work. Check it out on YouTube:

http://www.youtube.com/watch?v=F0ZoEGnTAM0&feature=related

I loved this and find it very effective, interesting and evocative. What do you think?

You can also see other short pieces on hemophilia on YouTube, most not that good. Not surprisingly, the best ones seem to be from India. Congratulations HFI on your outstanding PR work!

Great Book I Read: Second Acts by Stephen M. Pollan with Mark Levine.
This is primarily a book for people who have already been through one career, and/or are in mid-life, but I also found it useful for anyone thinking about any career. It’s an easy read, with lots of examples, including the author’s (Stephen Pollan) own compelling story of why he changed careers so suddenly mid-life, and inspires you to have the courage to follow your dreams. And he helps you uncover what those dreams might be. Three out of four stars.

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