Mumbai: Hemophilia Camp, “Children Free of Pain”
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 high rises owned by billionaires.
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.
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.
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.
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.
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.
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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 Judging the arts & crafts
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 like cream with milk.”
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!
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.
