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Saturday, November 09, 2013

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
Interview for Save One Life
Happy Diwali!
Indira and Usha on beach

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