Save One Life

Durgapur: Civility in Poverty

Laurie Kelley November 22, 2013

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.

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 interviews with our scholarship 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, especiailly the recipients of our new scholarship fund

The Save One Life scholarship fund is unprecedented 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.

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.

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, motorbikes, 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 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.

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

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

Laurie Kelley November 17, 2013

Monday, November 11, 2013 Kolkata

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.

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.

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.

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.

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.

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)

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

Fallen But Not Forgotten

Laurie Kelley September 23, 2013

I did it! Yessir, I’ve gone from cycling a paltry 21 miles back in June (to which Barry Haarde prodded me to go further) to 105.5 miles yesterday. Not bad for a 55-year-old mom. I’d jump up and down but my left knee is stiff.

Brother Tim Morrow, wife Lee, and Laurie Kelley

On Saturday, I completed my first “century,” riding over 100 miles across Massachusetts. Many lessons learned from this event, and many parallels to our hemophilia community. In fact, I thought about our special community the whole way.

The first annual “Ride to Remember” honored two fallen police officers killed in June 2012 in the line of duty: Kevin Ambrose of Springfield, and José Torres of Westfield. My brother Tim Morrow, a K-9 officer in Springfield, my hometown, was a close friend of Kevin Ambrose. The ride raises
awareness of the perils of our men and women in blue, and also raises money for law enforcement families. So I couldn’t help but think of my friend Barry Haarde, who rode across America, both last year and this year, to raise money for Save One Life, and to raise awareness of our “fallen,” those with hemophilia who died from HIV, contracted in the late 1970s and early 1980s from the blood-clotting products they used. Barry posted a photo each day of his ride on Facebook of someone who had passed away, including his own brother, to honor their memory. Like our police officers, these young men sacrificed their lives so that others, including all our children today, can have a safer life. Only, they did not go willingly into this service. No matter. Heroes all.

About 250 police officers, colleagues, and family members, like me, gathered in Springfield, Massachusetts Saturday morning, September 21, at 6 am in the mildly chilly air. We were blessed with excellent weather: no rain, slight overcast skies for a while. While we milled about, eager to get going, like race horses twitching in their gates, we were reminded by Sgt. Delaney, who organized the event, this was not a race. We would stay
together as much as possible—very tough, as the roads were often one lane each way as we weaved our way through the charming towns of New England. My brother Tim and I are naturally competitive and wanted to break away (well, he later did!) but we complied as much as possible. He had trained weekly with his colleagues; I trained solo. I’ve never ridden in a group before. I looked about and saw a lot of hardware—expensive bikes, wheel, spokes, cables—and software—arms, legs, heads. I was a bit wary of riding too close to anyone due to my own inexperience in group riding.

We gulped down bagels and bananas and at 7 am shoved off, herded by a police escort of about 20 motorcycles to keep us in formation, much like a pack of helmeted border collies. What would get us through 105 miles to Boston? Not just bagels and bananas.

“Take it easy, baby…” (Take It As It Comes)

Music helps pass the time and motivates, so I thought of my favorite songs from my favorite band: the Doors, of course. I was amused at how many songs and lines seemed appropriate for this journey.

I was shivering in the misty cool air, but thought of our guide Jacob on Mt. Kilimanjaro: “Pole, pole…(slow, slow)” A journey of a thousand miles starts with a few steps. We were cautioned to go at a slow pace, 13 to 15 miles per hour. Now, 15 miles per hour is my regular speed, but here it was like crawling. It was challenging to have riders blocking my view, causing me to swerve, weave, wiggle
my front wheel to keep balance. The first rest stop was only 18 miles away, which also seemed too soon. We’re used to going 20-25 without a break.

We took it easy and it was. My fingers and palms would go numb occasionally from the morning chill but that would ease once
the sun rose. Stop #1: Palmer. So far so good. We laughed, joked, ate more
bananas and guzzled water. Tim and I would later mention we have never eaten so much in one day in our lives, but you have to eat. It’s the one piece of advice I
took seriously: eat every 15-30 minutes, drink constantly. My sister-in-law Lee made delicious sandwiches that went down fast. On we go!

“Keep your eyes on the road, your hands upon the wheel…” (Roadhouse Blues)

The pack was still thick as we kicked off to the next segment of the ride. I had to constantly monitor who was riding up on my right or left, who was slowing down in front. Hills. So many hills. Steep and
long. I’m not a big person, and I don’t have the quadriceps that some of these cops have, but I noticed on the hills I blew past a lot of the guys who could outgun me on a straightaway. I attribute this to my cross training and core workouts with my trainer, Dan. When the quads burn out, and they will quickly on these hills, the body kicks in other parts, like back and abs. Mine were primed and
ready to take over on hills. This is why cross training is so important: you can get serious back problems from overtraining one part of the body and not all parts. Yahoo! Up the hills I went, happy.

Laurie coasting; Tim behind with raised fist

We passed through such quaint and picturesque New England towns: congregational church steeples piercing the blue skies above pumpkins plopped next to hay bales, antique shops. This is Sturbridge, our next stop and a historic town. I am baffled that I have never toured Sturbridge
before this!

Break On Through

Nothing can explain why, at the third stop in Charleton, I hit some sort of wall. I routinely ride 70 miles every Sunday; what was this all about? My mind felt fuzzy, quads buzzing with fatigue. I kind of stumbled in and grabbed some food. I resented having to stop so often, but you know, in the end, it was good the organizers made us stop. Otherwise we would burn ourselves out. I hardly saw Tim; he seemed to know everyone, and was busy chatting with his comrades. I actually am used to riding alone, and being alone, and didn’t really know anyone. I made a few friends, but preferred to use my rest time to stretch, eat and hydrate. Time to break through this wall. Maybe I should rename this section Pink Floyd’s The Wall?

Light My Fire

Well, things change! Back on the road, muscles got warmed up, and we hit a huge, long hill right off the bat. That was tough but again, I found the hills not a problem. I felt more motivated and competent and pushed it. Looking at the MapMyRide app, which charted my whole ride, I hit
18 mph at some points on this ride. Maybe that was down hill? Naw, because my speedometer said 35 mph going downhill. We were kicking it! This felt great
now. I learned something important about group riding, which I now prefer to
call team riding: you can draft. This means you ride behind another cyclist, who absorbs the brunt of the wind. You ride faster with less effort. I usually
can’t get above 18 mph, and even then only for a short time; now I was easily doing 19 mph with minimum effort. A lesson for teamwork, a lesson for our community. Stick together; lead; follow; be efficient; allow other leaders to take the helm when you get fatigued; listen to the leader, who spots danger first—Slow! Pothole!

Occasionally I would reach behind me and grab Snickers bars from the back pockets on my shirt, or Shot Blocks, or Gu gel, which give instant energy. Whatever I was doing it was working. Felt great!

Queen of the Highway

After 5.5 hours, we hit Grafton, next stop, about 60 miles in. We all checked in with each other: “How you feeling?” We lost a few riders and I watched the noble bikes sadly get hung on the inside walls of a truck, feeling badly for the riders. There were a couple of crashes too; riders who got too close to one another, or perhaps hit a pothole. My brother Tim even crashed. Flying downhill, probably at speeds over 35 mph, there was a sudden left hand turn at an intersection; he couldn’t slow down fast enough because the riders in front of him were going slower, so he thoughtfully went straight across the intersection, into a field and catapulted over his handlebars! Luckily, he hit soft ground and despite this spectacular landing, didn’t even have a scratch.

Only 40 something miles to go. This was so doable and easy! I plugged in my headphones now, and cranked up my music. We had a full police escort the whole way. The traffic in the oncoming lanes was stopped; all traffic in intersections was stopped. The world stopped for us!
Occasionally we had folks coming out of their homes to stand by the side of the road to cheer us on. Sweet. I felt unstoppable. Finishing was not going to be a problem!

I noticed that when hills appeared on the horizons, the riders, some 100 or more ahead of me, would swarm suddenly and become a huge pedaling mass. This is when I took to the incoming traffic lane,
as I could pedal pretty well up the hills, blowing by the big guys (and some petite women) who puffed and struggled. I started riding on the incoming traffic lane; I didn’t have to get too close to other riders, and had lots of room. Fun!

Stop 5: Ashland High School. Eat, eat, eat, hydrate. Stretch. Channel 22 news was interviewing riders, and providing live coverage. This was our last stop till Boston! About 30 miles to go.

“The future’s uncertain…” (Roadhouse Blues)

I was zooming along, when at mile 93—almost done—something kind of popped. In a second I had pain in my left knee, and couldn’t get it to work. I went from 19 mph to 9 mph in seconds. I could not
push that knee for anything. I think I was right on Rt 9, police motorcycles swarming around me, riders now zooming by me. I had been popping Tylenols the whole ride to help with general muscle soreness and specifically my neck, which has some arthritis in it. But nothing helped this. I hobbled along, dropping further and further behind in the pack.

I now lost focus on the surroundings and barely noticed the spectators cheering us on; we went through Wellesley, then Newton. I had my eyes down and was pushing my right leg hard to compensate. Don’t quit on me now! Thankfully, there was a final stop at Boston
College (that didn’t show on our ride map), where we all gathered in a huge, heaving, blue mob.

Do It

I limped over to Tim, who was straddling his bike and gripping his handlebars, even though this was a 30-minute rest, like he was ready to bolt. He took me to the emergency team where they taped my knee. It
was the least we could do, and the most they could do. We waited on the grass
till 5 pm, when the organizers grouped us for the final push into Boston. There
was a ceremony waiting for us.

That was a painful ride. My beautiful adopted home city of Boston, the birthplace of America, all the familiar sites—the Citgo sign! Seeing that made us believe we can do it. But I couldn’t keep up
well. I felt I was the last rider (though Lee assures me I wasn’t). The streets were lined with thousands of people waving, cheering, with flags and banners for the fallen officers and for us. I was in a surreal zone mentally. Through Fenway, down a tunnel, popping up to Beacon Hill and our beautiful state house
with the gold dome forged by Paul Revere himself.

“This is the end, beautiful friend….”

It was done. 105.5 miles. As I sailed to the back of the State House, I saved my GPS map and stats, and then and there my second and last power pack died—perfect timing. Everyone had that “high” so familiar when you do something athletically great, and are so tired but so euphoric. My
brother Tim and I hugged; this is the first time we ever did anything like this
together, let alone apart (although he is quite a competitive athlete). My
sister-in-law Lee gets the credit for providing our gear when we needed it,
giving us fuel to keep us going, and being moral support!

A beautiful ceremony ensued, with full honor guard, and the heads of state of the law enforcement, including Attorney General
Martha Coakley. Though we were exhausted and hungry, we stood more or less silently for 90 minutes while the dignitaries went through speeches and read the names of every single officer killed in action in Springfield. Very sobering, very sad. Such heroes.

And while standing there, at this beautiful memorial, where the names of Officers Ambrose and Torres had already been added, it reminded me that we in hemophilia do not yet have our memorial. Our shrine, where names can be added, where people can come and pay their respects. Almost 10,000 innocent people with hemophilia and HIV died, becoming the sacrificial lambs for future better and safer treatment of hemophilia. Barry did an astounding ride last year and this year to honor them. Maybe it’s time to think about our own memorial to our own “Fallen But Not Forgotten.”

My brother Tim told me that the activity with the highest fatalities when you are a cop is approaching a vehicle, whether for a routine traffic stop or for suspicious behavior. You don’t know if or when the driver will pull a gun or if you will be struck by another car. That amazed me; how dangerous is their work! And for us, it used to be that injecting factor was as dangerous; you didn’t know which vial had HIV.
Now, we don’t have those worries. We have those fallen to thank. I hope someday we can, through our own memorial.

Greater love has no one than this: to lay down one’s life for one’s friends. John 15:13http://www.wwlp.com/news/massachusetts/springfield-to-boston-ride-to-remember

Walking In Their Shoes For A Day

Laurie Kelley July 9, 2013

Sweltering heat, 100% humidity, long rides, sweat dripping
down our necks, back, arms, stepping gingerly through mud, grass, dirt… this
job ain’t glamorous or for the needy. Well, yes, it is for the needy; needy as
in being a child in poverty, motherless, earning a dollar a day, not having
enough to eat. These are the children with hemophilia we visited today outside
of Santo Domingo, in the Dominican Republic. It’s a day when you put your own
needs aside and realize just how shockingly removed we are from how most of the
world lives.

I first attended CampYo Sí Puedo (Yes I Can!) in Lomas Linda, just outside of Santo Domingo, the
capital, for the past four days. I was going to blog about this amazing camp
tonight, but today readjusted our reality to the real reason we exist: to get
sponsorships for deserving children in desperate situations.

My day started with a shocking jolt at 8 am, after returning
from an hour-long run near the beach in the growing heat. From Tanzania, Dr.
James emailed me that Cuthbert, the little boy to whom I gave Tanzania’s first
home infusion, died of a GI bleed that could have been treated with factor
concentrate. We have been helping Tanzania for the past 6-7 years, and Cuthbert
was one of the first children with hemophilia I met there. His loss is
devastating.

But we headed out to visit the living; the children whose
needs still must be met. Visiting the children in their homes, we see how much
they lack, in the simple things we expect: clean water, sanitation,
transportation, nutritious food, books, imagination, education. Add to that
hemophilia and their lives are a daily struggle to survive, like Cuthbert’s.
Today we visited five families in about six hours. I’ll only mention two for
now.

At 10 am we rumbled along a crumbling, stony road in
Haydee’s SUV, built like a tank thankfully, to a cluster of wood shacks. The
farthest one housed the Ciriaco family. Huge plants fringed the walkways and
doors so that we had to duck sometimes. The house is made of wood slats, with
plenty of gaps in them to let sun shine in like laser beams in the morning, and
mosquitoes in at night. There are no screens, but the family does have
electricity as evidenced from the jury-rigged wires criss-crossing the shacks.

The family enjoys watching videos from camp on my iPhone

The family greeted us warmly; Luis Miguel, the son with hemophilia, sheepishly
tagged along, though he had just seen us at camp for four days! Why shy now?
His sister Nicole was not shy at all. Pretty in her beaded hair, she readily
hugged and snuggled. We all walked down to the river’s edge, where Luis
Miguel’s mother explained that the river rose in April of 2012 (11,000 impoverished
people had to relocate!) and completely flooded their meager home. They lost
most everything they had. I was told that the government came, helped for about
four days, and left. There’s no compensation, no one to sue, and certainly no
insurance. You are simply in the hands of fate.

Because the family was registered with Haydee’s
organization, the Fundación Apoyo al Hemofílico (FAHEM), they received food, clothing and support.
We snapped some pictures, interviewed the family a little then had to move on to the next three families.

At the end of the day, we drove to Wilson’s house. We drove far away from the city, on decent roads, until we started seeing less businesses and homes, and more shacks, colorful laundry strung to dry, overgrown plants and lots of chickens. Rural Dominican Republic. After asking numerous people for some sketchy directions, we eventually came to the right barrios and saw Wilson waiting by the side of the road. He hopped in, exclaimed, “Hello Laureen!” (in English no less!) and then showed us how to
navigate the dirt roads to his home.

It’s as pretty as a home can get in rural poverty. Lime green, little front porch. Inside, one giant room, divided with a cloth hung from a line, to serve as a wall. Wilson is 10, and wants someday to be a lawyer. He’s factor VIII deficient, but looks in good shape. Indeed at camp, he stole our hearts with his charm and smile. His mother Evalisa was present, and little by little, children and curious neighbors peered at us from their porches. Wilson has a sponsor already, new, and I can’t wait to share photos with him. As we chatted, little children ran about, holding hands, posing for a quick picture, which I then showed them in playback to their great amusement. Giggling, curious and trusting, I’m sure they haven’t seen our likes before!

I distributed some donated gifts: jewelry for the mom and grandmother, toys for the kids, and an envelope with some money for the mother. Wilson is a born businessman; he ran up to Vincente, a father of a child with hemophilia who has volunteered with FAHEM for years and who is a lawyer, and presented him with a beta fish…. in a whiskey bottle, sans whiskey. Vincente paid him a few pesos, and off we went with our fish in a bottle. I suggested we call him “Wilson,” and asked if the fish had hemophilia too.

Haydée, Vincente, and I stopped at a mall, and as we climbed out of the SUV. We strolled through the mall with our whiskey bottle, the fish sloshing about inside, causing a few security guards to turn their heads. We had a delicious lunch of chicken, discussing all the kids we saw today, with Wilson the Fish in the center of the table. Will the kids have a future? If we can get them sponsored, and continue to
get factor into the country. Well, we accomplished our goal to visit five families today, which was exhausting, but we didn’t exactly walk in their shoes for a day. It was only for a few hours, and it left us tired and contemplative.

We parted—Vincente with Wilson the Fish and I with tons of photos, visual images burned in our memory, and much work ahead of us. If you want to sponsor one of our five kids visited today (and we can show you great photos!) please visit www.SaveOneLife.net

Celebrating Heroes Among Us

Laurie Kelley May 26, 2013

Save One Life celebrated its third annual spring Gala at an elegant, waterfront venue, The Exchange, located at Boston’s historic Fish Pier. Enjoying the balcony overlooking the ocean, or the expansive interior, about 120 guests from across the country dined on hors d’oeuvres and mingled. Guests represented the hemophilia community in full range, from pharmaceutical companies, to specialty pharmacies, from patients to families.

Neil Herson receives recognition from Martha Hopewell

I opened the evening at 7 pm welcoming our guests. I like to use very current events to weave into my talks, and found a metaphor to use in my opening: while getting ready for the gala, I dropped something on the floor. When I bent down, I happened to look under my bedroom bureau and amidst the dust bunnies, I found a shoe that had been missing for some time. It made me think that sometimes we have to go into the dark places, the not-so-glamorous places, even the dirty places where we’d rather not go to find the things we are missing or have lost. In our affluent society (and most of us are affluent compared to those we serve), we slowly and subtly can lose our compassion, tolerance, mission, and unconditional giving.

A slide show of the many faces of children and young adults from developing countries helped by Save One Life played in the background during the three hour gala, showing some of those unglamorous places–megaslums, rural villages, hamlets, townships. It also showed the faces of suffering.

We thanked our sponsors of the event, donors, and presented Donor of the Year award to Rich Gaton and his company, BDI Pharma, who sponsor 17 children. Special recognition was given to Patrick Schmidt, CEO of FFF Enterprises (88 children), Wolfgang Marguerre, chairman of Octapharma (70 children), and Neil Herson, president of ASD Healthcare (50 children). Only Neil was present from Texas that night.

We had special guests present: Usha Parthasarathy and her husband from India. Usha is our volunteer liaison, and we simply would not have an Indian program without her. We have over 500 beneficiaries just in India and Usha maintains updates on them all! She received a surprise award for her dedication. And she accepted Program Partner of the Year award on behalf of the Kunnamkulam Chapter in India.

A special award was also given to Barry Haarde, a 47-year-old Texan with hemophilia and HIV who had just concluded his second Ride Across America that afternoon, at 3 pm in Salisbury, Massachusetts! Such dedication! Barry averaged over 100 miles a day to raise $35,000 for Save One Life. Barry also dedicated each day of his ride to someone who passed away from hemophilia and HIV, and posted their photos on Facebook. Remarkable thoughtfulness!

Our Inspiration Award went to board member Chris Bombardier, a 27-year-old who has summit both Kilimanjaro and Aconcagua, highest peaks on their continents, becoming the first American with hemophilia on Kili, and the first person with hemophilia ever to summit Aconcagua. We were blessed to have both men in our midst Thursday night.

Laurie with local patients Justin Levesque and Mark Zatyrka of AHF

Thanks to everyone who attended this wonderful event! We raised money to help support our great team. Without them, we could not operate or progress; with them, we have progressed so far!

We have more children waiting for sponsorship. Please visit www.saveonelife.net to learn more! (More gala pics to come!)

Interesting Book I am Reading
All That You Can’t Leave Behind: A Rookie Missionary’s Life in Africa by Ryan Murphy

This might be a good first book for someone
contemplating becoming a missionary in Africa. It’s an interesting first look at the culture shock one can experience. It’s also interesting what drove Ryan and his wife and new baby to ell everything they owned, beg for survival funds, and leave to a difficult place to teach the schoolchildren of other missionaries. For the experienced, this book is much too fluffy, superficial and lacking in depth, history. It’s told in a rambling, blog-style or journal-style, which might appeal to the younger generation. Not bad, but not meaty or deep; it’s a quick read, too. Two/five stars.