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
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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