New Year Blessings: Dreams Can Come True!

When it’s a new year, we tend to make
goals, lists, things we want to accomplish. I love doing this myself, and I love
bringing other’s goals to fruition. That’s pretty much our aim at Save One
Life, to assess needs, meet needs, and offer people with bleeding disorders who
live in the most difficult of circumstances hope and even a new beginning.
I recall meeting Jitendra, age 14, in
India in November 2012. I met a group of mothers and fathers and their children
on the trip in Bhubaneswar, in Orissa, one of the poorest states in India. It
is rich in history though, with so many ancient temples, deemed World Heritage
sites.
Though I met many families that day, one
truly stood out. A father with a driven, intense, haunted look in his eyes. We
enrolled his son, Jitendra, and I asked the father his story: what had happened
to them, what was the greatest challenge they faced? Usually we hear that there
is no factor, they have little money, the child misses school. This father’s
story was different.
He was living in a tent with Jitendra, as
a homeless person, as floods had washed away their home. (And by home, I mean
probably a thatched roof hut. They live 150 kilometers away from the hospital.
The father works on a farm, and must travel far away form his only son each day.
I was stirred by the intense look on his face; his eyes seemed to bore into me.

When I asked him what one thing would
make your life easier, expecting him to say free factor, he said emphatically
and without hesitation: a vegetable selling business, to open a roadside
vendorship, to be near his son. Awesome
answer. Needs 50,000 rupees ($1,000) to start. That is an enormous amount of
money for him, about one year’s salary.
Can you imagine if someone gave you one
year’s salary, and you were homeless? The temptation is always there to drink,
have fun, squander it. Not this guy. He used the money Save One Life gave him from its Micro-Enterprise Grant program to open the stand, and
earn his own living. Now he is near his son and doesn’t have to be away on the
farm working. What a Happy new year for him!
And even better? The Orissa government,
one of the poorest in India, is buying factor. Not a miracle, but the result of
intense lobbying by the hemophilia chapter there and its leadership—a young man
with hemophilia named Chitta.
If they can achieve those new year goals,
imagine what we here in the US can do!
Viit www.saveonelife.org to learn how you can help the poor with hemophilia!

Believe in Us: Bhubaneswar and Pondicherry

Greeting patients in Bhubaneswar
We flew in Thursday night (Nov. 14) to Bhubaneswar. I love Bhubaneswar. It’s small, colorful, intriguing, and poor. Paved roads give way to dirt roads; cars give way to bull-drawn carts. Sometimes it seems the poorer the place, the more intrigued and comfortable I am. If I dared to believe in reincarnation, as Hindus do, I’d say I must have come from the slums in an earlier life. I am at home in them, and am drawn to them.

The hotel is nice that we checked into last night. Clean, quiet. But no hot shower, again. Will I never have a hot shower in India? This time it’s because the water heater was “hidden” from view—my own fault. The food in the restaurant is also good. Indian food is just delicious!

Chittaranjan

Usha and I again pack up toys and factor to share, and Chittaranjan, the secretary for the Bhubaneswar chapter, picks us up at 8:30 am. We go to the medical college where Chitta is attending as a nursing student.

Chitta is an amazing young man. Only 24, but so unworldly mature. He has hemophilia, limited access to any factor, is going to college, doing well, and running a whole hemophilia chapter! He pulled together this entire event today. His demeanor is respectful, but he knows when to push to get an idea or suggestion across. I marvel at his diplomatic communication skills. This young man is a keeper.

Greeting from the Dean of the Medical College

The event was lovely. A large sign welcoming us personally was hung on the wall. A special plaque was given to us both thank us for our help. So many families had traveled from very far away, to see us. We got to meet them all, one by one, and ask some questions related to their lives.

For example, one, Jitendra, is 14 years old. He receives money from Save One Life and spends it on education and treatment. He lives 150 kilometers away. His father works on a farm, and must travel far away daily. The father had an intense countenance, a combinaton of fear and desperation.

Laurie with young beneficiary of Save One Life

When I asked him what one thing would make your life easier (expecting him to say free factor) he said emphatically and without hesitation: a vegetable selling business, to open a roadside vendorship, to be near his son. Awesome answer. He needs 50,000 rupees to start ($1,000). Through out chat we learned that a storm ruined his house and he now lives in a tent!! He only earns $100 a month. We stressed to our partners that they must inform us when disaster strikes our beneficiaries! We can help this man, and I promise him we will get this money for his business.

We took photos with each child, recorded their progress and needs. The dean of the medical college came in to meet us, and greet the children. After a few hours, a take-away lunch was served, and we set out to do some home visits. One obstacle to our work is language: communication is really confusing here. India has about 70 languages, so when we travel to different cities, we have to speak English, translated into Hindi, translated into the local language and then back again. So three people are needed to ask questions and translate! When 2-3 people are speaking simultaneously, explaining, talking over each other, questions and answers are easily misunderstood. We must be über careful when interviewing so correct information is taken. Some things are almost a given and are never misconstrued: most families earn about $10- $40 a month, nothing when you think of what they have to buy. And add hemophilia on top of this… life is a day to day struggle to survive.
This is one reason why education is paramount. When you meet a child in the States, you often ask, “How old are you?” In India, you must ask, “What class are you?” Education trumps anything else in their young lives. Education is a key to a future. This is one reason why we stress that Save One Life monies be considered for funding education costs.

Bikram wants to be a doctor

We head out eventually to visit Bikram, a young man who is sponsored by Save One Life but who needs a scholarship. He desperately wants to attend medical college and needs funding to study for one year, called “medical coaching,” so he can pass the exams to get in. Bikram lives in a clean, new building, but he and his parents live in one small room of this. There is nowhere to cook. There is no bathroom, just a public one down the hall and out a door. There’s one bed and you must use your imagination to sort out where do they all sleep? Bikram never smiles the entire time we visit. I compliment him on the colorful motivational charts I see on the wall.  Set goals. Listen to directions. Believe in yourself.

I tell Bikram we will get him the $1,000 he needs for coaching. Somehow. Believe in us. The mother has tears in her eyes when we explain to her we will help. She offers us some simple food, in the customs of Indians when you come to their home. It is always startling humbling when you are in the homes of the poor, sometimes the poorest of the poor, and they exhibit more  graciousness than just about anyone you know.

Street in Cuttack

On Friday morning, we head to Cuttack, a suburb of Bhubaneswar, about an hour away. It’s a very colorful ride, past temples, roadside vendors, and fruit stands. The streets are a mad scramble packed with cows, bicycles, motorbikes, autorickshaws, trucks and cars. The hospital is a public one, so it is exploding with people. Chitta, Usha and I have to shoulder by a crowd to get in to the hematology ward.

Deepak needs immediate surgery
Our goal was simply to say hello to the director of hematology. He has so many people waiting in line we feel guilty being ushered in. We chat a bit, snap some photos, and then head out to the wards. While at the wards, we come across a huge and shocking surprise. A 16 year old boy, Deepak Das, propped up in a sad bed, flanked by his worried parents. His right thigh is grotesquely swollen, causing his right foot to drop; the skin is stretched till it looks like it might explode. It’s a pseudotumor, Dr. Sudha explains, and he needs an amputation ASAP. This is a complicated case and we urge the staff to consider bringing him to an HTC. They have no factor to do the operation and the operation has been postponed but the boy is now critical. We pledge the factor and any money that can help. The mother starts to cry, and the father immediately sets to praying intensely. India’s culture does not include hugging in public, but this mother, so grateful leans into me and we hug.

Usha, our amazing liaison for Save One Life
Our last city is Pondicherry, in the south, a short drive from Chennai. We flew to Chennai for two days to attend the 25th anniversary celebration of the Chapter, where Usha is from. She is delighted to be home. But Sunday morning, back on the road with a two hour drive to Pondi. Pondicherry is a former French colony which still retains a French flair about it. It’s pretty and quite different than the rest of India. It has temples, museums and a botanical garden (you know this if you watched Life of Pi). It seems to me there are however more stray dogs here than anywhere else. India is ravaged by stray dogs much as the dogs themselves are ravaged by fleas, ticks and skin disease —ubiquitous, yellow mutts with the mandatory
curly tail, as though they were all sired at one time by a common set of parents. Half are lame; many are lactating. They are starved, wary and are everywhere. They set their eyes on me, Usha says, because they know I look different and they are hoping for better treatment from a foreigner. They do tend to approach me and follow me.


We meet with a large group of children at the clinic, and do a home visit in the evening. on Monday, my last day in India, we go to the beach with Dr. Nalini, who runs the clinic and the chapter. Usha and I stand at the Bay of Bengal, enjoying the fresh sea breeze and watching the European tourists. We take in an ashram, where people go to study yoga, and best of all, an ancient 15 century Hindu temple. We removed our shoes, and walk in gingerly, speaking in hushed tones. I witnesses how Hindus pray; their unusual gods, with elephant and monkey heads, blue faced, adorning the walls.  I joined a line to enter a sacred room, where everyone was praying. An oil lamp was brought out by a half-naked Indian, and devotees waved their hands in the flame, then touched power to their heads.

A blessing from an elephant

Exiting, I was surprised by an enormous pewter-colored elephant, ornamentally painted and sporting an ankle bracelet, just outside the temple door. When you offer it a coin, it snatches it then touches your head in blessing. Not having any rupees, I think I gave it a New York City transit coin.

We were tired after the day; the weather was steamy and humid. We drove back to Chennai, straight to the airport, after saying our good byes to Nalini. We stopped at a roadside place that was good, and ate some Northern Indian food and masala tea, summing up our to-do list for the week. I was kind of happy to be back in my traveling clothes—black pants, white sleeveless hiking top—but sad to leave. On this my fourth trip, I am used to India now, comfortable. I never get sick, and love the food and people. I do get mentally drained trying to sort out the languages, cadences and interruptions, but am ridiculously pleased overall with how Save One Life programs are functioning and are actually making a concrete measurable difference in patients’ lives.

Back towards Chennai and the city was crazy bustling at night. Thousands of roadside vendors, shops, motorcycles, autorickshaws. It’s a sensory overload. I am in awe at the amount of humanity in one city. And yet the airport was all but empty, giving Usha and me the time and space to say a bittersweet good bye. We are great partners, and compatible traveling mates. I guess it all seems easy when you have one mission, one goal. Much to think about on a 24-hour ride back to my world.

Greeting from the beneficiaries in Pondicherry


Durgapur: Civility in Poverty

Durgapur Chapter has its own
treatment center

On Tuesday November 12, Usha and I took a 6 hour train from Kolkata (Calcutta) to Durgapur, one of my favorite stops. Why? I don’t know.
Perhaps it’s just the smallness of the city that charms me. It’s poor but colorful,
manageable. I was only there for a day three years ago, but I feel I recognize it and am at home here. Isn’t
that odd?

Boarding
the train in Kolkata is always stressful. It’s a huge station, with thousands of people. We have porters to help us, and the railway system in India is fabulously on time and orderly. In such a sea of Indian humanity,  I am stared at like something that fell from the sky. Mostly, when I smile or wave, my gazers beam back at
me. 
Usha thanking the families

Laurie Kelley accepting gift

The
train ride was long, and Usha and I chatted a good portion of it. They serve delicious masala tea, which makes it bearable. But while we are used to our jumbo size coffee cups, tea or coffee is served only in dainty little dixie cup sizes. I am chronically caffeine-deprived. When we arrive in Durgapur, I look up from my seat and Ajoy Roy is already
there, grabbing my luggage. It feels like no time has passed since I was there
three years ago. Ajoy has no personal connection to hemophilia, other than his
friend, Subhajit Banerjee, who has hemophilia and runs the chapter, yet he dedicates all his free time to helping our boys. Subhajit and I have
been acquainted for 15 years, mostly through the internet and at World
Federation of Hemophilia meetings. Cars were arranged and we go straight to the
hotel, not far away. Getting all our luggage and ourselves into the small cars
is tricky but the Indians are resourceful and clever and somehow, no matter how
much we bring, it all fits. This is perhaps the nicest of the hotels we stay in
for our entire trip. The air is hot but not humid; sunny skies, busy city, with
autorickshaws, bicycles, cars and cows bustling about with the speed of a mad
video game (well, except for the plodding but sacred cows).

Usha conducts interveiws with our scolarship winners

Usha
and I wash the train from our hands and feet, have lunch together, taking our time, sort the toys and factor and head
to the large and clean treatment center. Durgapur is lucky to have a whole center dedicated to hemophilia. The patients are gathered and have waited so long and calmly for our arrival. Many recognize me and I them. We sit at a table at the head of the room, smiling at the families. Subhajit, Ajoy and other members of their team hover about, ensuring everything goes correctly. They give lovely speeches welcoming us, and present gifts; I
present a check for $500. Then we ask to meet the beneficiaries, especailly the recipients of our new scholarship fund

Sukdev is learning
computers

The Save One Life scholarship fund is unprecendented in hemophilia. I got the idea for it during my travels, when assessing the needs of patients. Over and over, the young men asked if there was any financial help to get them through college. Education is a lifeline in countries like India; without a degree, you do not stand much of a chance of getting good work. The young men are hungry for education, a degree and work; with these, they can buy their own medicine and one day support their families. The eldest son in an Indian family will be expected to care for not only his parents but any dependent sibling, like unmarried sisters.

One
of the most interesting young men we met is Sukdev. He’s taking a two-year computer
course at the ITI (Industrial Training Institute). His father is a cook in a
small town; they are very poor. He’s a great singer, according
to everyone present, and Sukdev bows his head, sheepishly smiling. He had a CNS bleed en route to camp when he was younger. Camp was
his first exposure to life outside his little village, population 400. He
learned about head bleed symptoms from chapter, so when he got a bleed, he knew
what was happening. Subhajit and Ajoy are proud of this outcome. It took him over four hours to get to this meeting. I feel
guilty; we give him some money for transportation.
Laurie and Usha with Durgapur families

All
five young men we meet with are doing well and look good. They have special needs: two need laptops, which we pledge we will try to get for them. After
these interviews, we meet with all the families again. The hunger in their
eyes—for money, factor, help—is penetrating. We finally meet each one, snap
photos, distribute toothbrushes (a gift from the Hemophilia Foundation of North
Carolina) and puzzles and other donated toys. One mother becomes agitated and
speaks out, tears in her eyes. Her son cannot walk. The staff talk to her to
calm her, and some might think she was exploiting our visit, but I tell Usha I don’t blame her. You get no where by being quiet
and this is her moment, with a foreign visitor. A big discussion ensues about
the child, who observes quietly. The mother wants factor, help.

Agitated mom, son with hemarthrosis

After a break at the hotel and some quick
food, we head out to two homes. These are about a 45 minute ride from the city,
into the villages. The roads are made of dirt and are very bumby. We have to
constantly dodge oncoming traffic, which includes trucks, motobikes, horse
drawn carts, cars, bicycles and occasionally a massive water buffalo. The streets are fringed
with vendor shops, which sell everything from vegetables to tires. The sun sets
until it is pretty much dark when we reach the thatched home of Sheikh Rajiv. We have to trek
behind some other village homes in the dark, through went grass, to arrive at
his home. Subhajit has a flashlight and shines the way, warning me not to fall
off the path and into the adjoining field. I wonder if there are snakes
slithering around.

Sheikh
Street Vendors

Rajiv Family

 Sheikh lives in a one room  home made of
mud, with a hay roof; the one room is only 12×12 for four people. There is
electricity, but no refrigerator or any convenience of any type. Living here
is primitive. The father works in a rice shop. His office closes at 10 pm and
he bikes back from Durgapur over the very rough, dangerous roads, about 10
miles, which takes over one hour. Every day he does this. And he has a child
with hemophilia to consider. We sit on the bed, which takes up half the room,
and the family is excited and nervous. We ask questions, present gifts to the
two children, and their mother brings in a tray with drinks and wonderful Indian
desserts. I could write a blog just on Indian desserts. They are indescribably
delicious. Despite having already eaten, we taste some of the desserts. First,
because they are great! Second, this is a huge deal to this family. To have
international guests come to their home, and to serve them. It would be the
height of rudeness not to accept something. Despite their poverty, Sheikh is
doing well and looks great. He is well cared for by the society. When we leave,
the village turns out to gawk and then wave us on with good wishes. They love
having their photo taken.



Das Family

Tuhin Das lives just down the street.
Indeed, Sheikh’s father comes with us to show us where he lives. This house is
slightly bigger with a front entry–but we are still talking rustic and small. Still it’s big enough for a bed, a
table, some chairs and a bookcase. The father is a strikingly
handsome man, tall and lean with chiseled features. I sought to compare him to
some movie star, maybe Clint Eastwood. The inside décor is a riot of color and
knick knacks, giving the room a busy but warm feeling. A little plastic table
with plastic chairs is set, and the father ceremoniously and carefully brings
in a tray with more sweets and soft drinks. It hits me how polite and classy
these two families are. I have been in countless homes throughout the world,
including homes of millionaires and homes of the destitute. I have found the
greatest level of graciousness in the homes of the poor. They shower us with
welcomes, with humble sincerity, and put their guests first. It’s always a
lesson in civility on how to treat guests. The father sets our plates with the
flair of a well trained waiter.

He sells vegetables by pulling cart
around town. The mother stays at home, with the two children, who attend
school. A child with a bleed means the father has to take time off from work,
and loses money. He is a day laborer, and his income depends on hustling
vegetables. He earns about $1 a day. He does have a fridge, which the first
father eyes lustily. We discuss what would help each family further, and the
Sheikh’s father would really like a fridge. Imagine if that were the number one
item on your wish list? We told him we can get that for him and in fact, I give
Usha the money and tell her to get him one tomorrow. The mother can use the
fridge to store factor, but also to “rent” out some shelves and earn a little
extra money.
The mosquitoes are also glad we came and
I seem to be the only one being gnawed on. We finally pack up and say our good
byes, and head back on the bumpy road, out of the rural village, back through

Lesson in civility from the poor
frantic Durgapur, back to our quiet and elegant hotel, one room of which is twice
the size of either home.



















Great Book I Just Read
Behind the Beautiful Forevers by Katherine Boo [Kindle]

Boo spent several years embedded in a Mumbai, India slum to record the true stories of life as a slumdweller in India. Trash sorters, street vendors, teachers, prostitutes… the slum has a delicate economic and social balance that is easily tipped when disaster stikes, as when one of the inhabitants sets herself on fire, and another family is accused. The book centers on this dramatic and true case, which serves to hihglight the daily struggle of indiviudal families, how they deal with the corrupt police, sway politicians and try to survive. A masterpiece in international development literature. Four/five stars.

Calcutta: Scholars Amid the Squalor

Monday, November 11, 2013 Kolkata

Sheets being cleaned

Have you seen the movie “The Life of Pi”? A phenomenal achievement in cinematography that happen also to be a stunning story about life. It starts off with a boy named Pi from Pondicherry, where I am now. I’ve been in India for almost two weeks, hitting six cities, visiting treatment centers and most of all, visiting some of the families and patients enrolled in Save One Life, which numbers about 600 in India! I’ll get to Pondicherry next week—first, I want to fill in what’s happened since Mumbai.

Rickshaw

In last week’s blog, I detailed the hemophilia camp (Camp HemoSOL) in Mumbai. After camp, Usha Parthasarathy, of Chennai, a mother of an adult some with hemophilia, and former VP Development of Hemophilia Federation (India), the national organization, and one of the founders of the Chennai chapter, and I flew to Kolkata (Calcutta), on the east coast, arriving late Sunday night. We awoke Monday morning, November 11, to the Muslim muezzins calling the faithful at 5 am on loudspeakers, and then hearing the rhythmic thwunk, thwunk of bed sheets and towels being slapped across rocks by workers at the massive green pool that stretches below our hotel window. The sheets are hung to dry like stiff, grey banners. I’m not sure what beating them against rocks does. My sheets and towels still don’t look too bright or white.

Admitted for an infusion

Our morning and early afternoon was spent at the new treatment center, a gift from a wealthy patron. It’s stunningly clean, an anomaly in Kolkata, a city besieged with people, cars, and mountains of trash; we meet with many patients. One is a teen with a bandage on his head; his expression is a bit wary. I later learn he is the same boy, age 6, I met back in 2001 when I first visited. He was then an orphan, and the center was raising him. He lived there! Now he is with relatives and looks good. Another boy, sweet faced and gentle, with his mother.

Another, a jolly-faced, round boy, who had been sleeping but they woke him. He smiled deliriously while we snapped photos. Finally another teen whose home I had visited in 2005; I never forget these faces and I’m amazed that he’s here on the one day I visit eight years later.

Laurie Kelley with hemophilia patient

We asked questions about their treatment (mostly cryo and plasma!), passed out toothbrushes we were given by the families of North Carolina (and the Hemophilia Foundation of North Carolina’s Christmas party last year) and puzzles. We met with an older man, 64, with a psoas or hip bleed. He was there with his 16-year-old son who spoke English. The Indian patients are all so nice, patient, polite. Unfailingly polite. Eventually we get to the Save One Life scholarship recipients. These are young men who qualify for a grant of money to help defray the cost of college.

Usha examines a boy with a bleed
Laurie with a new Facebook friend, Ayan!

One boy, Sajid, really caught our eye. His parents have died, and he was short money for the education. He qualified for a scholarship from us, but was still $40 short for tuition. That’s a lot of money in a city like Kolkata. At age 21, he raised his own money by tutoring other students. And he was living on his own. We replaced that money that same day, telling him how proud we were of him; Usha had tears in her eyes hearing his story. This experience made me realize what a difference we were making in these boys lives.

Save One Life’s Kolkata Scholarship Recipients

After the visits with the boys, we took photos; the boys all seemed genuinely happy to see me, and hung around a while to snap photos. I figured they might be dying to get going home. Then Usha and I, along with members of the Kolkata Hemophilia Society, including Ravi Ojha and his son Siddhartha, drove to a restaurant, and had a late lunch. I am not eating much on this trip and my wristwatch now keeps sliding about my wrist as I lose weight. (My girlfriends all want to come with me on a trip when they see how I always lose weight!) The food was very good: roti, chepati, and my favorite— masala tea. After this, we went to visit a beneficiary in his home. Ashish is sponsored by BioRx’s president, Eric Hill, one of many he sponsors with us.

 

Kolkata has many homeless people who live on the streets

It was not a long car ride, but we shoulder our way through the clogged city streets, and went to the poorer section of Kolkata, though almost all of it seems so poor. Still, this is a fascinating city. Yellow cabs dash about madly alongside ancient rickshaws pulled by white-haired, iron-muscled old men. Lights are string up deliriously here, celebrating the festival of lights, Diwali. So it was nice to drive about at night, breathing in air that was at once cool but gritty, fringed by multi-colored lights, guided by flickering lamps lit at passing Hindu temples, and finally arriving at an alley where Ashish lives. He was waiting at the beginning of the alley, where sweet shop sat, guarded by a generic third-world yellow dog, complete with the mandatory curly tail, eating some crackers.

 

We were happy to see Ashish, and set off in the dark down the alley, a short walk to his house, with him leading the way. House is misleading; it’s only a 12 by 12 room, big enough for one king size mattress and one cabinet—that’s it. The family sleeps on the bed and on the cold and moist concrete floor. Ashish is adorable, with such personality and expressive face. He wrote a letter to Eric, in English! Then cut a little video for me. I loved this kid at once. His family was sweet and slightly embarrassed to have foreign visitors. The father was not present, but the mother was, and didn’t quite know what to do with herself. The children had no such problem; they giggled, mugged for my camera, and wriggled on the bed in excitement.

Asish, a Save One Life beneficiary

After a long day with too little sleep, I often feel like I want to skip the family visits, which invariably happen during the mosquito-driven night, in grimy places and dark environs. But I never regret going. It means the world to them—a visit from an American lady! And I brought stuffed animals which made them happy. We spilled out into the dark alley after the visit, and headed back to the car, with many waves and good byes.

Back at our hotel, Usha and I skipped dinner, once again, and snacked on the raw almonds I brought from Boston. I compile notes, process photos and turn in. Tomorrow we head for Durgapur, named after the goddess Durga, who brings success and wealth. Maybe for a lucky few; our hemophilia families do not know such luck, unless it’s knowing they have a hemophilia
chapter, some donated factor, and Save One Life. (Next week: Durgapur,
Bhubaneswar and Pondicherry)

Diwali lights

 

Siddhartha of the Kolkata Chapter with Ashish’s family

 

Laurie and Usha with Ashish in his “house”: the right and left walls are visible. The room is only 12×12 and houses six people

India Day 15: The “Jhopadpattis” of Bombay


Today was one of those days when you are so bone tired you think you cannot go on or bear any more. After all, we have been through ten cities in two weeks now, with little sleep, thousands of miles covered, trips on planes, trains and autos, through slums and countryside, but more importantly, listening for hours and hours to the needs and sufferings of those with hemophilia in poverty. After our visit tonight, Usha sat in the hotel room and cried. It was overpowering.

We left Pune (in Western India) this morning after a productive two-day visit. I’ll have to write about that Sunday, and our trip to Chennai. This tour of India is so rich in experiences, that I haven’t had the time to record everything. But let me tell you about tonight.

We drove by hired car for about three hours northwest to Mumbai, formerly known as Bombay, or “Good Bay” in Portuguese, so I’ve been told. Mumbai is one of the world’s mega-cities, with an estimated population of 14 million. You can easily be stunned just by the visual sensations: the city is absolutely pulsating with activity. Street vendors, pedestrians, auto rickshaws, taxis, trucks, motorbikes, bicycles, and cows. All a noisy, polluted, colorful metropolis.

After we gratefully settled into the Courtyard Marriott, we had a quick lunch and set to work, catching up on emails and such. At four o’clock we met in the lobby with Indira Nair, president of the Mumbai Chapter of HFI, who has a son with hemophilia, and Balshiram Gadhave, board member, who also has hemophilia. We set out in a taxi to visit two families.

The streets are choked with traffic and vehicles, and you take your life into your own hands when you choose to cross a street. And I am forever looking the wrong way, as they drive British here, on sides opposite to those in the US. We did cross the street, and stepped into another world, the jhopadpatti.

Jhopadpatti can be used to describe a group of one or two room housing units, laid out in a corridor, or simply to describe the slum. I’ve been to many a slum, but this one was sensory overload. In a distinctly Muslim section, it was crawling with children and street vendors, and everywhere you looked there was something to see: people hurrying by, skinned animals strung up for sale, windows with strips of candy or snacks fluttering in them for sale, women in black burkas, children running loose in packs, a cat munching on something dead, bullocks tied together in a massive herd in a shed, and noise—children yelling, motorbikes beeping… it all hit us like one massive assault on our senses.

Javeed, the boy we came to visit, led us to his humble home: a small, one room cinderblock dwelling, after a ten minute walk down the narrowest of alleys. When I snapped photos of the local boys, who mugged for me, he said in English, “Come. Dangerous here.”

In his home, there was barely enough room to stretch out my arms. Yet he and his younger brother with hemophilia, his mother and sister all live here. They even had just adopted (nothing formal) an infant whose mother died in childbirth and whose father abandoned the family. Think of this next time you feel bad for yourself: hemophilia, limited or no access to treatment, no privacy, no bathroom, no shower, no possessions. Yet Javeed goes to college and will eventually start a life better than this one. One day.

Around the corner we met Yatish, another young man who is actually getting his master’s degree! Intelligent, hard working, he told me he would one day leave the slum and take his mother with him and buy a home. He’s studying business, and I have no doubt he will reach his goals. Yatish’s home likewise is small, probably the size of a walk in closet, but his mother keep it immaculate. Still, as we spoke, I looked at the one bed, the size of a cot, and wondered who slept where? They pay for purified water to be pumped to the home, pennies a day. They pay $1.50 for monthly rent.

For both boys, their fortitude and determination are remarkable. Their ability to survive is admirable. Both are Save One Life boys, and we are so proud of them!

Walking out, I garnered stares from everyone, and the local children all followed me and begged for a photo, which I gladly took. Beautiful children, trapped in a slum, knowing nothing of green fields, sparkling rivers or polished homes. Yet they survive, and in the case of Javeed and Yatish, even thrive.

The slum seemed to spit us out onto the main street, where you truly have to monitor every second and every vehicle to avoid being struck. Dusk was falling, and a group of teens marched by pounding drums and carrying a gilded statue of the goddess Lakshmi, as this weekend is a holiday. All around India exploded in sound, color, noise, happiness and eternal sorrow. We grabbed an auto rickshaw—like riding in a golf cart— and quickly covered our mouths with our scarves, as the streets were filled with cars. The rickshaw is open, and we are level with exhaust pipes. I felt like I was being asphyxiated. If you’ve ever rode “Mr. Toad’s Wild Ride” in Disney World, you will know what the ride home was like.

While the Marriott was a welcomed refuge against the world outside, the world of the jhopadpatti would not leave our heads. For residents and those who visit, there seems no escape. Tomorrow I meet with 22 Save One Life beneficiaries, and then with greatly mixed feelings, leave for Boston.

I’ll write again on Sunday, to finish off my India journals, and tell you about the families we met in Chennai (east coast, last Monday) and Pune (west coast, yesterday).

India Day 10: The Phenomenal Hemophilia Work of Durgapur


I am in Pune right now, in Western India, very close to Bombay (Mumbai as it is now called), but let me back track again to describe my visit to the wonderful city of Durgapur.

On Sunday Usha and I had our driver take us for a three-hour ride from Calcutta on a well-constructed highway to the city of Durgapur. “Durga” is the Hindu goddess of power and wealth. This was a special visit for me, because I had befriended a board member, Subhajit Banerjee, years ago and had promised him on day I would visit his center.

Indeed, many years ago I ran a program that gave aid to hemophilia programs in developing countries, and gave the Durgapur chapter its first international grant of $5,000. They were so appreciative and invited me to come. I traveled to India in 2001 and then in 2005, but had no time to see Durgapur. For this trip, I told Usha that Durgapur was at the top of my list and if I saw no other city, I must get there. Today was the day!

I fell in love with Durgapur the minute we arrived. A big steel city, it nonetheless has a charm about it. It is colorful and easy to drive around. The city was getting ready for puja, a religious festival that honors the goddess, so her images are everywhere! You could feel the excitement.

I could also feel the heat. It was at least 95 degrees. As soon as we arrived we tossed our luggage into the hotel rooms, patted some water on us to cool down and went straight to the Hemophilic Society- Durgapur Chapter, and what a welcome!

Subhajit, President Mr.D.D.Sen and their team had assembled many of the parents and children, and they welcomed us with flowers first, then several children rubbed kum kum and tamaris on our foreheads, a traditional greeting to show respect for visitors. We all put our hands together in the traditional greeting and said “Namaste” enthusiastically. Like a dream come true for me!

We then sat in a well-decorated room, with ceiling fans droning overhead to cool us. So much time and thought was put into our greeting. All the children and patients came forward to bring us roses. Subajit read what I think was the nicest testimony to our work that I have ever heard. Indeed, he reminded me of things I had almost forgotten! We had ties that went back years with this chapter. Subhajit pointed out that almost all the physiotherapy equipment in the room was purchased with our grant. About 20 children were enrolled in Save One Life (and I know personally almost all the sponsors!). He said that the program helped them understand their patients better by requiring them to make home visits: indeed, on one such trip, during a six hour ride, the car got stuck and they had to push it our of the mud. Then, the committee members were chased by wild elephants! It made them realize how hard it is for patients to come to the center for treatment. And yes, this is exactly what Save One Life is all about—seeing the world from the eyes of the poorest patients, to know their needs in order to meet their needs.

After the lovely welcoming ceremony, I was ushered into a small, clean and air conditioned room. There, I began to meet the patients, one by one. In speaking with them, I began to learn of common threads in the fabric of their poverty. For example, the chapter team told me that the public education is so poor, deliberately poor, that students often hire private tutors, usually the same public school teachers! The teachers supplement their meager income this way, and the students get one-to-one teaching at home, a blessing for a child who suffers from hemophilia. All the student needs to do then is take the exams and pass. But this costs money. And this is where Save One Life is really helpful.

Other stories emerged, each one compelling: sometimes heartbreaking and sometimes cause for rejoicing. For example, Paru, who is sponsored by Ed Wilson of Pennsylvania, bought a fridge with money from Save One Life to help store ice. But he also needed to take out a loan of $80 to pay for it. Imagine, a loan for $80! This shows the very low level of living.

Asish is age 5 and factor IX deficient; factor IX is very hard to come by. The father is poor, a “casual” laborer, meaning his work is seasonal. He uses the donated money for his son’s education. When Asish said innocently, like any child, that he would like a bicycle someday, we alternately gasped and then laughed. Someday.

And Biswajit, sponsored by Diane and Kyle, is age 17. He is so painfully thin, and shuffles and speaks in a dreamlike way, that I guessed correctly he is severely malnourished. He was getting his funds for the first time, and he was so very grateful.

But the highlight of the day was a home visit in the late afternoon to Abishek. He is a handsome young man with severe hemophilia A who lives “close by” the clinic. In reality, it was a 40-minute ride down roads filled with auto rickshaws, trucks and motorbikes. He watched the red sun set while a grim, grimy soot filled the air. Durgapur is Steel Town, India and the steel mills belch out smoke round the clock. We eventually navigated down twisting, narrow alleys, so small that we had to back up again and again, and wiggle the van through them. When we could go no further, we then had to walk, attracting quite a crowd behind us, as I am sure it has been a long time, if ever, someone like me had visited. As we discussed Abishek’s case, I deftly dodged fresh cow dung, to put it politely, which was smeared on the crumbling walkway. I felt like I was doing some exotic dance moves in the near dark.

We reached Abishek’s home and ducked inside to escape the crowd of curious boys following us. Abishek is a young man, sponsored by none other than Patrick Schmidt, president of FFF Enterprises. Patrick would be proud to see his sponsored child: Abishek is attending college and intends to be a physician. He will do it, too. He has excellent grades, is well cared for by his hemophilia society, which gets factor whenever possible. And even using such small amounts of factor—he probably gets no more than 5,000 IUs a year—Abishek is in good shape because he uses ice, rests and compresses the bleed. He tried to never miss school. His family is completely dedicated to helping him, and despite living in such poverty, their small one room home was neat and clean. His mother offered us tea, the model of Indian hospitality, which I almost always find in the homes of the poor. We stayed for a while, and then got ready to leave.

As we walked down the concrete path to the street, about 100 or more faces greeted us: all the villagers had turned out to see us in sheer curiosity. Because I am American, white, a female… all the boys wanted to touch my hands, and I tried to shake as many as possible, feeling like a politician. I even videotaped them and they let out a cheer. Usha urged me to hurry into the car as this could turn into a friendly riot, so we jumped in.

The last stop of the day was the home of Subhajit Banerjee, board member of the Durgapur chapter, and a long time colleague. We had a delightful visit, meeting his elderly father and mother, and his children. With us was Ajoy Roy, another board member. Subhajit has hemophilia, and we’ve known each other a long time. Also Ujjwal Roy, former regional director for HFI and a long-time colleague. We had tea, many laughs, and took photos. Their children presented Usha and I with lovely hand made gifts, and I promised to come back and visit their school as a guest.

Durgapur is a model chapter, a true success story where patients come first. Subhajit and Ajoy, along with their team, demonstrate orderliness, discipline, documentation, while also providing solutions to the patients, and knowing every patient personally. I was beyond impressed with how they run their chapter. And it shows in the physical appearance of the patients, who look good. Still, there are deep needs to be met. Poverty in this part of the state is rampant, and families live far away. We’ll continue to support them through Save One Life, which has become a lifeline to many.

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