Save One Life

“I speak of Africa… “

By our calculations–5 hours!

I speak of Africa and golden joys—William
Shakespeare from Henry IV, Part II c. 1597

I just returned from nine days in Uganda, to assess the Haemophilia Foundation of Uganda for application to Save One Life, Inc., and also to visit with local families with hemophilia, to better understand what their struggles are. I have to say how impressed I am with the HFU, its volunteers and the accomplishments they have made to date. With board approval, we would be able to induct them as our 13th program partner. Below is one patient visit, which will give you a sense of what families in Uganda face. Their extreme poverty (average annual income is $500) is compounded severely by how far away they live from Kampala, the capital.
Kampala farmer’s market

Last Saturday, April 23,  Agnes Kisakye, the executive secretary of HFU, arrived in a hired van at 7:30 at my hotel, the Sheraton
Kampala, which is perched atop one of Kampala’s seven hills. We first stopped at the city square
market for bananas for breakfast. I didn’t get out of the van, but we were
swallowed up in a swarm of Ugandans, all busy shopping, negotiating prices,
filling plastic bags with fruit. A hive of frantic activity. The bananas–called kabaragara--were
small and sweet and I devoured three. The day was cool with blue skies. We were
ready for a long road trip, south of Kampala.

Carrying banana leaves
Scenes as we leave Kampala

It turned out to be way longer that we thought. A
three-hour trip became 5+ hours trying to find this one family in Kyabbogo. At
least we had a very comfortable van and Agnes is a great travel companion. She
is only 29, but very mature, socially conscientious and dedicated. She’s a registered social worker, and I was quite
impressed by her. I wish I could have tape-recorded the things she said; so much wisdom, though I knew many of these things because it’s the same in so many
countries. Her brother Joseph, now an MP (member of parliament), is the person who contacted me back in 2008 requesting help.

Tea plantations

[In fact, Agnes reminded me that I was the first to help Uganda. In 2008 an Indian working in
Uganda who had a child with hemophilia, Satish Pillai, emailed me about setting up a
foundation, and getting factor for his son. We worked together through email only, and he did all the groundwork in establishing the HFU. Satish later had to return to Mumbai, India but
appointed Joseph Ssewungu, a headteacher and father of a child with hemophilia, to replace him. Joseph and I had a
few emails back and forth, and in one he mentioned he had read my book, Raising
a Child with Hemophilia. I found that amazing. But eventually things quieted, and other countries in need diverted my

Beauty of Uganda

We stopped en route to buy groceries for the families. Though it
was just a little street market store, we got carried away and spend $120.
Agnes seemed aghast at how freely I spent money; she was hesitant to suggest
anything because she didn’t want to take what she thought was all my money. We
bought rice, sugar, salt, Coca-Cola, cookies, lollipops, Vaseline (“For their
skin,” Agnes said), soap—lots of soap—tea, loaves of bread, and cooking oil. 

Back on the road we chatted openly, like family members.  What a sharp girl she is, I thought; fluent in English, educated and a devout
Christian. We agreed that this work was our calling in life, and nothing could
stop us from helping the poor and suffering. I asked her when she knew she wanted to be
a social worker.
“I always wanted to make an impact, “ Agnes
recalled, “since I was young. I wasn’t sure exactly what I would do. But I
loved it, the idea that I would make a difference in someone’s life. I always
wanted to start an organization. I said to my friend one day, ‘You and I will
start an organization to help people’.” 
It hasn’t been easy trying to get the Haemophilia Foundation of Uganda
off the ground. “Being a volunteer is difficult. Some people show interest and
start to help us, but later they quit. I used to work as a volunteer for an
NGO, for HIV/AIDS education.” But when Satish left, she felt compelled to help
her brother full time. Now she volunteers full time, Monday through Friday and
many a weekend, to run the HFU. There are days when she stays at the Mulago
Hospital all day and into the evening—meeting with doctors and staff, and
counseling patients.
By 12:30 pm, we arrived at Kyotera (“Choterra”), took
a right, and the road deteriorated from paved to dirt roads, rowdy and
unpredictable. We had stopped many times along the way, to ask locals on the
side of the road where we were going. The frequent stops allowed me to drink in
the fleeting scenery: the dusty, red clay roads that branched off from the
highway and paved roads, forming a network like blood vessels throughout the
country. Everyone seemed to move at the same pace, languid, at ease. There are no beggars and everyone works. Down one alley, a small child
in shorts and plastic sandals lugs a huge blue plastic container with water and
disappears into a slum. Roadside shops sit shoulder to shoulder: one sells
tires, one sells headboards for a bed, unvarnished and raw, another sells colorful
clothes and markets them on stark white mannequins, oddly out of place. Some
young men wearing dusty clothes and a few teen girls in worn and damaged dresses—obviously
donated (one is a shiny party outfit; one looks like a Halloween Tinkerbell
costume; another is a tight club dress) wait patiently at a pump while a young
man furiously wields the handle to draw water from the community well; a small wooden
cart belches thick smoke from the meat cooking on it, filling the air with a delicious
smell of beef, and I realize I am suddenly hungry; plump women, wearing
colorful wraps around their waist and patterned turbans to protect their hair
from the dust, balance fruit and vegetables on their head to sell or to bring
home; three little children, the dust turning the color of their deep brown
skin to chalk, dance in rhythm to the music pulsating from a radio in front of
a store while an adult eggs them on. Everyone is barefoot, or at most
wearing just sandals or plastic flip-flops.
When the children on the roadside glance at me,
if they are not too shy, they break into beaming smiles and wave. It’s
encouraged to wave back, and I try to keep the window down when we ask for
directions so I can wave. “Muzungu!
they shout sometimes, their word for anyone not from Uganda, though mostly it
refers to white people. It’s not a slur; it’s just their word, much like when
the children of Haiti shouted “Blanc!” (White!) when they saw me, and tried to
touch my white skin.
As we drive, the pavement
gives way to hard red clay, with shoulders that sag, and the van rocks back
and forth with the unevenness. The rains and traffic have created deep ruts. We
roll up the windows as the van’s tires churn the clay to powder. Now the roadside stands have disappeared and only solitary homes are
spied through the thick vegetation. The homes for the most part are nice for
rural homes. Mud poured into a wood frame, and hardened, with a thatched roof,
or brick, made by hand, with a corrugated steel roof. Everything is cinnamon red.
Red dirt road, red brick homes, red-rusted steel roofs. Red and green are the
colors of Uganda.
There are several types of poverty: urban poverty,
with slums, poor hygiene, noise, pollution, alcohol, crowding, waste—but access
to hospitals and health care. There are megaslums, which defy the imagination,
where residents live like ants in an unhealthy and often dangerous colony. And
there is rural poverty, with lush vegetation, farm lands, rich soil,
fresh air, room to grow—but a lack of transportation, customers, and most of
all, lack of health care. Still, the scenery is beautiful, even if poor.
When we pass one small thatched mud structure,
Agnes says, “That’s witchcraft.” Noting my raised eyebrows, she continued.
“Witchcraft is still practiced here, especially in rural areas. That would be a
witchdoctor’s place to meet with families. He will diagnose someone, and then
offer a remedy. It is so crazy! He might say, ‘Take the fingernail clippings of
your child with hemophilia, of the parents, of the relatives. Now go throw
those in the river. The river will carry them away and with it, the disease. Your
child will be cured.’ Or he may take some backcloth and banana leaves and wrap
up some part of the person—their hair, for example—and say now the disease is
She added, of course, it’s a scam. The
witchdoctor will first do a bit of research. “He checks with other people who
work with him, to learn more about the patient. What are their symptoms? Who is
sick? Who has been sick in the family? Then when the family goes to see him, he
will say, ‘It is your child that is sick?’ Yes! ‘He bleeds a lot?’ Yes! So it
looks to the family like he is magical and knows everything.”
The Kajimbo family: four boys with hemophilia

Going to a witchdoctor sounds quaint, but it is anything
but cheap. In a country where the average annual salary is $500, and an
educated physician earns about $200 a month, a witchdoctor can charge anywhere
from $100 to $300—a session! This is the power of culture, traditional beliefs
and desperation. Health clinics are hard to find and far away. Rural families
become victim to their limited education, isolation, and the charisma of the
witchdoctors. “There are no government policies or laws regarding witchdoctors,”
Agnes adds.

After 30 minutes of jostling, we arrive at the
destination: a vermilion brick-and-mortar home with a spacious front yard of
dirt, and surrounded out back by farming fields. This is where the Kajimbo
family lives. We unfolded ourselves out of the van and stretched, smiling at
the children who gathered in curiosity. The sun warmed our visit. We decided
first to get acquainted, and then to bring in the gifts. The mother Harriett
and father Richard came out of the house first, and shook hands, he smiling
reservedly, she smiling in anticipation. The first thing I noticed was that
their clothes were remarkably clean compared to their surroundings, as though
they had just changed. Harriett’s eyes sparkled, and her hair was a woven
masterpiece, plaited to perfection. Her dress was bright blue and white. Richard
wore a comfortable blue polo shirt and khaki pants. They were in great contrast
to the children, who were dressed in stained and torn clothes, and who went
barefoot, and had dirty face and hands. It was incongruent.
Laurie Kelley with baby Joel

Still, the children seemed happy and at ease, and
deeply curious. We entered their home. There was no where for the family to
sit, so they congregated on a rug covering the packed earthen floor.
The baby, Joel, was fat and happy, and I was thrilled to take him, diaperless—always
a calculated risk—into my arms, and jiggle him on my knee. Agnes and I were
given the one bench in the welcoming room. Each child came to us one at a time,
and reached out to shake hands while bending deeply down on their knees; this
is a sign of respect for elders, and not easy to do for children with joint

Inside the red brick home: earthen floors

Introductions: Six children, four with
hemophilia. Bad odds. January, age 15; Emmanuel, age 13; Richard, age 9; and
Ronald, age 5. January smiled but looked a bit stunned; Emmanuel had a ready,
warm, friendly smile, as if he had been expecting us at long last; Richard
conjured a mischievous smile, which made you wonder what he was thinking; and
Ronald tightened his lips at us, refusing to surrender any hospitality. But my,
were they all beautiful children. A sister sidled in through the raggedy
curtain that separated the welcoming room from the other five rooms. Josephine
seemed shy but wanted desperately to make friends with us.

Somehow barriers came down fast and we were
laughing in no time. A pod of neighborhood children plugged the doorway,
leaning in, eyes wide open in astonishment. The driver had brought some bags
over by now, and we handed out lollipops first—no barriers were left after
that. The children saw at once that they came first. There were plenty to share
with the neighborhood children, which no doubt boosted the reputation of the
Kajimbo family. But Ronald still did not smile.

Agnes explained Save One Life to them, and also
that I was a mother of a child with hemophilia. This tidbit also breaks
down barriers instantly. Harriett looked at me with widened eyes now. After the
overview, we did the enrollment forms, starting with January. The enrollment
was easy as there wasn’t much information, and all of it was the same for all
four kids. They all missed an entire term (out of three annually) last year due
to bleeds. School is five miles away, and they often cannot walk the distance. They
can’t afford transportation to take them to school. When they do go to school,
they sometimes get “caned,” beaten with a reed or stick for infractions. This
is old-school British and still acceptable here. January goes to school with
8-year-olds in primary 3, because he is so far behind. This embarrasses him. He
gets no treatment; Mulago Hospital in Kampala is five hours away and requires a
motorbike ride on the rough, unfinished road we just conquered, and then
waiting for a public bus to take to the capital. And it costs $50, while
the family’s monthly income is $15-$30.


We surveyed the house: they have no electricity,
running water, indoor toilet or plumbing, or refrigerator. The floors are
concrete or red packed soil. Cloth doors separate the six rooms and it’s
impossible to stay clean, as dust coats everything. Out back, a brick shed for
cooking, an outhouse, and one rib-showing, starved black and white dog
collapsed in the heat. All the kids—same story. What do they do when not in
school? “Digging in the garden,” which means they do chores: farming, seeding,
harvesting. Harriett is only 29, with six kids, a huge responsibility. Still,
she smiles happily as she takes Joel from me.

Our funding may help the kids get back into
school, or help feed them. We share the butter, rice, sugar and supplies with
Harriett, who is overwhelmed by our generosity. We hand out toys, many of them
simple, donated toys, especially the super-heroes and plastic creatures that have sat
in a basket for two years in my basement. I finally dumped the last of them in
my duffel bag, and now, Ronald holds what looks like a silver Power
Ranger-wannabe in his hands. He is dumbfounded, then catches on, then finally….
Breaks into a huge smile. Boys just love action figures, no matter where they
Emmauel’s knees; all the
boys have joint damage

We go outside and do a line up so I can take
photos. We photograph January’s knee, particularly his prominent scar from surgery,
before he was diagnosed. He reminds me of Mitch from Haiti, who also almost
died from surgery before being diagnosed.

Back inside, January comes out from the back room
with a surprise: a chicken! Agnes laughs and I hold it for a photo opp. They offer the chicken as a token of their appreciation. The poor thing had its legs
trussed up and was hung upside down, then laid on the floor, immobile. Its eyes bulging, fearful, waiting to know its fate: lunch, dinner? Were we to take it back five hours to Kampala like that? I wondered what the Sheraton staff would say if I walked in with a chicken. I had to refuse, even though
this was impolite. Agnes explained to the families that I love animals and could not bear to
see it like this. The lucky chicken was paroled and January took it back outside.

As we prepare to leave, we do a
family picture, with me holding Joel. Harriett comes out of the house, and suddenly drops to her knees before me, and
holds my hand. This is unusual for an adult, I think, and I thank her but also
encourage her to stand up.

The Kajimbo’s kitchen

We are happy when we leave, and once back on
paved ground, we stop at a hotel for lunch, feeding the drivers as well. I don’t
each much, but enjoy a Coke immensely. Agnes and I talk about what can be done
for the family, what their daily life must be like. How much $.73 a day–the cost of a sponsorship from Save One Life, will impact their life. It might be the best thing that will ever happen to them.

Next Sunday’s Blog: Our visit up north to find one family. Please check in next Sunday!
Agnes Kisakye and the Kajimbo boys
My chicken!

Amazing Gift from Alnylam Pharmaceuticals

We’ve been bringing you news of new products in the pipeline by
pharmaceutical companies. But how about an amazing holiday gift– that is not
a product–from the employees at Alnylam Pharmaceuticals?

Don’t recognize the name? You will. Alnylam is working on a
revolutionary hemophilia product, called ALN-AT3, that would require a
subcutaneous (under the skin) injection. It’s still in clinical trials and
we’ll relate more about its progress in the coming months. Alnylam caught wind
of Save One Life, the nonprofit I founded to help children with bleeding
disorders in developing countries. 
Front row: Laurie Kelley (L), Irene Aquino, Martha
Hopwell (R) and the Alnylam team
 They surprised us with a idea. They hired a live auctioneer,
held a big social event, and invited employees to come and bid on donated items.
Alnylam received over 100 items donated by employees and local businesses in
Cambridge, Massachusetts, their headquarters. 
Hosted at La Laboratoire Cafe Art Science, it sounded like a
wonderful time. In addition to those who attended the actual auction, hundreds
of employees donated money. Some of the unique items donated included: dinners
hosted by executives, weekend vacation homes, homemade baked goods, sports
tickets, handcrafted items made by Alnylam employees.
One employee told me she sponsored a child as a Christmas gift for
her boyfriend. It’s amazing what can be accomplished when people act for the common
Martha Hopewell, Save One Life’s executive director, and I had
visited Alnylam to do a presentation on our work, early in December. The
auction followed. I think the presentation hit home.
The total? Over $50,000! This is an astounding gift for Save One
Life, as we operate with tight budgets. And the very best part is the majority
will go to sponsor 20 children in poverty in several countries for five years.

This is a great model and inspiration for other pharmaceutical
companies in the bleeding disorder business. And an inspiration to us. Thanks
to everyone at Alnylam who donated. Your gift will make a direct difference in
a child’s life for years to come. What better gift than that?

A Nuthatch, A Martian, A Haitian

There’s something thrilling, affirming, even epic about saving a life. Perhaps it’s that feeling of hope you get afterwards, or a sense of personal power. Maybe just knowing that you did something that 
mattered to someone.

On Thursday I was working in my home, when I heard a distinctive “this-doesn’t-sound-right” squeak. A pet owner for 21 years, I knew that sound, and descending the stairs, saw my cat Tina with a nuthatch in her mouth. A quick hiss from me and she dropped it. The poor little bird: it was in shock. Mouth gaping, gasping, eyes blinking furiously, one leg twisted. I cradled it in my hands for a while to warm it, then hauled out the very handy and well used “critter keeper” plastic box, where all injured wildlife goes. I left the bird alone for two hours. When I returned, it was standing, flapping its wings, eyes bright and eager. Best of all, both legs seem to be functioning. I took it to the back door and opened the top. She flew immediately to a tree, upside down, which is what they do. 
I felt so serene, at peace, so happy that I didn’t have to decide the fate of this miniscule, delicate fowl.
That night, I went to see the movie The Martian, starring Matt Damon. (My ex-brother in law was his math teacher in high school–just a little personal trivia) It’s a survival story (my favorite genre) and sci-fi (also a favorite), but more than that it was a human interest story. It’s about an astronaut who is accidentially left behind after a wild sandstorm causes the rest of the crew to abandon the mission on Mars. His team is in the process of returning to Earth when they realize he’s still alive on the hostile planet. 
The real story is how everyone rallies to save his life, no matter the cost. At the high point of the movie, with David Bowie’s poignant and heart-warming song “Starman” playing in the background, you see everyone on earth watching the drama unfold, glued to their TVs and cell phones, while a space crew volunteers another 18 months of their lives to return to save the one they left behind on Mars. The Chinese sacrifice a proprietary and secret space project and offer it to the Americans to help rescue the astronaut.  In this massive global effort, you realize NASA will be spending millions, if not billions of dollars, time and energy to save this one person. Just one man
It’s worth it. You realize that you cannot put a price on one life. People will sacrifice sometimes their own lives to save others, will sacrifice money, time, personal pleasure. We somehow rise above our own needs and wants, above our differences, to something that we think is bigger than ourselves. 
It’s almost a challenge to be a better person  tomorrow than who we are today.
A few weeks ago I heard about Jamesley, a 16-year-old with hemophilia in Haiti. He lives in a home for children, a place where children are placed when the parents can no longer care for them. He has an open, suppurating wound, the result of an operation. He needs factor. Project SHARE has sent factor to Haiti before but the problem is, we don’t know what factor deficiency he is. And he lives in a rather remote place. Haiti has poor infrastructure and many hills.
This was beyond my problem-solving skills so I sent a mass email out to all the people I have met since I first went to Haiti in 2002. Together, we rallied. What can we do? Bring Jamesley to Cap-Haitien in the north, where there is a doctor I know? No, there are no labs for hemophilia testing there. Should we bring him to the Dominican Republic, where he can be tested at the Robert Reid Cabral Hospital? I have many friends there. But he doesn’t have a passport, and the 8-hour bus ride would be difficult; who will accompany him, who will pay for him?
Enter Dr. David Andrews, a pathologist from University of Miami, who knows a lot about hemophilia and testing for hemophilia. Bring a sample of the blood to Miami and I’ll test it, he said.
How to get the sample to Miami?
Granted this isn’t like rescuing someone stranded on Mars, but then again, this is real life. 
Yesterday, a medical volunteer team from the States just happened to be nearby his village. They took Jamesley’s blood sample at 10:30 am, packed it up, and by 6:30 pm landed in Miami. Dr. Andrews, on his day off presumably, drove to the hotel to pick up the sample and should have an answer by the time you read this blog posting.
It seemed to difficult at first: so many options and so many obstacles. Then, it suddenly seemed so easy, when everyone worked together… all for the sake of one orphan. So worth it.
When I know what his factor deficiency is, then I can send the factor to the orphanage, under the supervision of the attending physician, and Jamesley can heal.
There are wars raging, natural disasters, a massive refugee crisis…. often the news is overwhelming. I think for me this is why focusing on one life is so fulfilling: we helped one. We saved one. We did something. Instead of feeling powerless, we felt useful, needed, fulfilled.
I went to bed last night happy as a lark… or a nuthatch.

Great Book I Just Read

To Reach the Clouds: My High Wire Walk Between the Twin Towers [Kindle]
Philippe Petit

The book on which the excellent movie “The Walk” is based, Petit provides a breathless narrative, as if it is happening right now, about the inspiration, the intricate and complex planning and the execution of the most daring high wire act in history. The planning–with myriad things that could go wrong and did go wrong–which took months, tremendous dedication and stealth, is so in-depth and exhausting, it makes the high wire walk look like– well, a walk! A must read for those who want to see how a vision can motivate others (who have nothing to gain) to action, how strategy can lead to perfect execution of plans. The writing is entertaining, witty and past faced. Petit is a creative genius in many ways, Five/five stars.

Nepal Part 2: Hope Among the Ruins

Laxmi (our lovely program director of the Nepal Hemophilia

When visiting developing countries, I love visiting hemophilia families out in their homes, something I’ve been doing for almost 20 years. These can
be rough days. It’s hot, we’re at a high altitude in Kathmandu, Nepal; my heart
pounds when I exert myself too much, and I get dehydrated quickly. But think of
what these families endure, especially post-earthquake. They give me strength.

Binita’s house 

Binita and son Aayush
Laurie Kelley and Aayush 
Ujol, Guyatri, Binita, Laurie, Barun, Nirmal, Manil
Society), Gyatri (admin assistant) and Beda (person with hemophilia and president of NHS) came at 10 to get me in a sturdy land rover. I had four gift bags of donated
items for any kids we would visit. We dodged
the traffic jams of downtown Kathmandu and hit the outskirts. Our first stop was not too far. We parked the
car, stepped out. Before starting the ascent of stairs to our first home, I noticed a lowly worm
writing in the dust at the foot of the first stair, ants crawling on it. I love
garden creatures, worms especially (I guess because they are so helpless), and
always am fascinated when I find them. To the horror of my hosts, I bent over
and picked it up and tossed it gently into the plants, so it could live. The
ants would surely eat it. Laxmi gasped… but Beda said, “It’s a living thing,
too.” “Yes, I added, and they are good for the earth.” I made them laugh when I
cheered, “Save One Life!” Or worm.

Living in a shed
The house we
visited was grand, tall, mounted on a small hill. But it was damaged in the earthquake
and now has been deemed unlivable. Binita greeted us; she’s a beautiful woman, but
her eyes carry such sadness in them. Her husband, a handsome man in his early
40s, died last year of cancer. This leaves her a widow, never able to remarry
according to custom, and alone now with a child with hemophilia in a land that
provides no factor, save for donations that trickle in. There are never enough
donations for the needs.
She greeted me
warmly and we hugged, as if we had known each other for years. We gingerly stepped
inside. Cracks and fallen plaster abounded. We climbed the wooden stairs, up to
the second and then third floors, until we stood on the upper balcony, which
provided a rich view of lush Kathmandu Valley. What a shame; this is truly a
lovely house.
Aayush, her son,
a handsome young boy with a dazzling smile gladly let us take photos.
Back downstairs
and we navigated through the dirt and sometimes mud to Binita’s temporary
house. This means she lives in a corrugated steel shed. Yes, a shed. It bakes
them in the intense heat, and deafens them when the rains come. There is no
insulation or luxury. The carpets on the floor were soaked. We kicked off our
shoes at the door, as is the custom, before entering and our feet were wet
immediately. Kindly, Binita poured us Mountain Dew, a popular drink here. We sat and chatted. On the wall were photos of
her and her husband from when they got married. A beautiful couple, full of
I asked Laxmi
about her situation. “Will she be able to remarry one day?” “Oh no,” Laxmi
said. “She cannot.” Many women, some young, lost their husbands during the
decade-long armed Maoist insurgency, I’ve read. To remarry, even when widowed
at the tender age of 21, would be to flaunt the social order. And the pressure
can be intense and cruel. It’s difficult for a woman to be single here. Almost
impossible. Binita added, “Nine people live here too.” Her in-laws, and more. I
looked around slowly. The shed couldn’t be more than 15 ft x 20 ft. Nine
Reconstruction everywhere

When we emerged from the
shed, we caught Barun (a man with hemophilia who used to be on the executive
committee of the Nepal Hemophilia Society) smoking over by a barrel. We
tsk-tsked him but he jokingly quipped, “My painkiller.”  We trudged back to the car a slightly
different way, and eventually down a paved road by a massive wall of stone.
“This had been totally collapsed from the earthquake,” Laxmi narrated. Looking
up, we saw men diligently at work, cementing the new stones in place. It seemed
everywhere in Kathmandu construction was happening.
Next stop, Puskar’s home. This took us further out away from Kathmandu, into a
more rural area, in the Kageshwaori Municipality, a town called Sanchez. The
drive was probably not more than 40 minutes. We parked near a field, and then hiked
down a dirt road. Up ahead was a terrible site: a brick home, completely collapsed.
Caved in, red dusty bricks strewn everywhere, but mostly in a vermillion heap.
Laxman, the father, stood nearby. He has a handsome, intense face, with a flash
of white teeth and readily smiles. Which is hard to believe when you look at
what is left of his house. Puskar, who was at school, is 11, factor VIII
We peppered him
with questions: where was he when the quake hit on April 25? What happened?
Ujol and Laurie at Puskar’s home
Laxman said he
was outside; no one was in the home, thankfully. Indeed, it seems that everyone
considers themselves lucky. Lucky that it was a Saturday, and more people were
not in office buildings. Lucky it was not a school day, or more children would
have died. Lucky, lucky, lucky. It’s a testament to their faith, their reliance
that despite their profound losses, they consider themselves lucky.
Chatting in
Nepalese, the father and the group of NHS executives all laughed. I marveled at
how he could be laughing when fate has dealt him blow after blow: a child with
hemophilia, poverty, earthquake. There’s no self-pity, only perseverance and
We then took a
walk, through an open field that was actually refreshing in the mid-day heat,
and then through rice crops, startling green and lush, and then over a creek. I
had to jump across. For Barun, it was a challenge as he has contractures in his
joints. With helping hands from Ujol, the NHS general secretary and father of a son
with hemophilia, Barun made it across. We spied a steel, corrugated shed, just
like Binita’s, up ahead. This was Laxman’s temporary home. Inside, much the same
as Binita’s: hot, dark with a wet floor. Laxman’s wife was present, and sweetly
presented us with Mountain Dew.
The hospitality
of the poor never ceases to amaze me.
We chatted a
while, and took photos. I asked Laxman who was helping him rebuild his home.
With Laxmi (the program director of NHS) translating, he replied, “No one. I’m
doing it myself.” He works in the daytime at a desk job, then returns each
evening to lay bricks. All this was said without self-pity or arrogance.
Puskar’s temporary home
When we walked
outside we caught Barun again having a smoke, and kidded him about his painkiller.
Though this time I think he really needed it.
We brushed
through the rice fields again, and back to our trusty Land Rover. Our next stop
was to go to the school Puskar attends. It was a short drive, and an impressive
school. With 400 uniformed children, the school provided classes, recreation (including
a pool) and hot meals. American cartoon characters were brightly painted on the
faded yellow wall surrounding the school. Just inside the main gate, gaily
colored statues of Buddha, Shiva and Kali.
I asked the
headmistress how she felt caring for a child with hemophilia at her school. “It
is fine,” she said in perfect English. “We welcome him. The father told us
about hemophilia, and we know what to do.” She added, in more measured tones,
“We do ask that the children not push him or hurt him. So he often does not
play as much as the others.” While she spoke, Puskar walked up, a gangly
11-year-old, all arm and legs, slim, with pale skin, and large eyes. I’m sure
he felt embarrassed being called out in front of his classmates, who were all
seated quietly under a canopy, eating lunch.
Laxman and son Puskar
The headmistress
pointed to the main building, which had visible cracks. “Normally we have class
in there,” she explained, “but due to the earthquake, we have to hold class

Puskar waited patiently, answered some basic questions in English, which he is
studying. But I could tell he really wanted to get back to his classmates! We
excused him and he took off like a shot, with all of us admonishing him to slow
down! It did no good.

We piled back
into the Land Rover and headed for the next house. This was in an area very
hard hit by the earthquake. Every single building had damage, and whole blocks
were nothing but rubble. The earthquake loosened the plaster, covering the buildings,
and the bricks tumbled out like a Lego set dumped from a box.  It looked like a bomb had gone off in
the center square. In what used to be a park in the center were tents, and squatters
in the them.  
A mother shyly
tagged alongside me, holding a wide-eyed baby in her arms. She was dirty, thin,
but coy. I find the people are always surprised when you smile back and chat
with them. She was excited to make contact; her baby not so much, as he leaned
way back away from me. She lived in the tent now, and came from another village
that was totally destroyed. I thought ironically, we pay to go camping in
tents. Her life is now reduced to living in a tent like a refugee.
On to Danchi, Sankhu.
We next arrived at the home of Achyut Shrestha, age 26, who wasn’t at home.
He’s a government employee now, and no longer in the Save One Life program;
another success! The tall, narrow brick home stood on a corner. The mother, a
short, dark woman in a flaming red sari, descended slowly down the stairs. She
gave us a namaste, and clasped my hands, so happy to see us. Her daughter was
also present, and warmly greeted us. They invited us in right away, something I
was not so sure we should do. Up the concrete stairs and ducking, entered the
small second story room. Cracks veined every wall, and fresh concrete had just
been applied to patch up some. It’s a poor home, and not livable. “We use this
in the day time to cook,” the mother explained. “But at night we sleep
somewhere else.” The government has condemned most of the buildings in town.
I’m not sure what will be the fate of everyone.
Hospitality in the temporary home
The funds donated
by Save One Life and the Mary Gooley Treatment Center (Rochester, NY) will help
pay for repairs. We walked down the road, out side the town, and saw sprawling
hills, green fields and small temples. Next to the temples, more tents; a half
naked baby boy toddled outside one of them. We smiled at his charm, but inside
felt sad about his condition. Down the road, around a bend, we came to another
part of town. The mother explained she was having a new house built. Sure
enough, a man, woman and young girl were busy laying bricks. There would be two
homes, in one building.
Why two? She
smiled shyly. “Because I have two sons.” I realize she wants them married with
their own homes. We all smiled.
Our last stop was the home of the
Rajbchak family. Here live the parents and two young men with hemophilia,
Jagatman (age 25) and Jagatlal (nicknamed “Monsoon”). Monsoon was on hand to greet
us and was the only family member who spoke English, and not just English but
flawless English. He was charming and intelligent. To the left, the remnants of
his two-story family home. Half the house collapsed into the lot next to it. I
climbed the rubble heap to have a closer look, and down at my feet, amidst the
ruins, fresh, strong sprouts were shooting up. It reminded me of a quote from
Robert Frost when asked about the meaning of life. His response, “It goes on.”
The sprouts reminded me of the reliance of the Nepalese.
Monsoon, like the others, had no
self-pity. How could anyone? They all faced the same problems. The boys’ father
appeared, a strong man, who is in the process of also singlehandedly building a
new home. It’s also a metal shed, but he is plastering the walls to make it more
livable. It’s much bigger than the other sheds. We stood inside for a photo.
We walked down the road to see our
magnum opus: a mobile cell phone repair shop. Though humble by Western
standards, the shop was perched at a crossroads (perfect location!) and had an
open front that promoted watches, toys, picture frames and candy. Inside,
visible from the front counter, was a young man busily at work: Jagatman. He’s
rather famous to both Save One Life and Project SHARE.
We first heard of Jagatman when he needed
to have his leg amputated, result of an untreated bleed. We quickly gave the
donation and the operation was a success. He has an artificial leg that enables
him to walk about without crutches. So here he is: 26, one leg, hemophilia,
with no home. He was busy at work, surrounded by all sorts of electrical parts,
wires and circuits. He knew what he was doing. Through Save One Life he
received a scholarship to get training in cell phone repair. Then, with our
mircrogrant, he opened his own repair shop.
I consider him a miracle, a marvel.
He has unending reservoirs of strength. He paused long enough to smile and
thank us, but got back to work. I think he wanted to prove to us that our
investment was well used!
We all started to relax, seeing the
man he has become, tired after our long day, and happy with this family’s
enduring success. The boys’ mother brought out fresh yogurt drink, which was
lovely after a long day with no food. We entirely forgot about lunch! At least
seven hours had slipped but without food.
Monsoon shared, “The shop is doing
well. We are making about $500 a month now. But we have to pay rent and for the
items.” Still, $500 a month is an astounding figure for Nepal, and for a
disabled person, and just after a major earthquake.
When it was time to go, we shook
hands, gave our namastes, and waved good-bye. The long and bumpy ride back to
Kathmandu was punctuated with laughs and shrieks from the back seats: the young
people, Laxmi, Barun, Nirmal, were swapping stories and jokes. I didn’t know what
they were saying but their laughter gave me so much pleasure and hope.

Jagatman and brother Jagatlal, who both have hemophilia
Jagatman’s store: a Save One Life success story!
The Nepalese seem to have great
faith, and the most reliant of spirits. It seems nothing can keep them down
long. I hope this is true, because they still have much to do in the aftermath
of April 25. But they—we—will do it together.

Haarde to Ride!

Or not hard to ride… after all, this is Barry’s fourth trip across country on a bicycle! He makes it look so easy. 100 miles a day? Not a problem. I’m lucky if I do that three times in a summer!

If you haven’t gotten involved, now’s the time. Wheels for the World: Barry is performing this astounding feat as a fundraiser for Save One Life. Moved by the plight of children suffering without factor in developing countries, Barry has sacrificed time off from work, and his own comfort (though I think he kind of enjoys this crazy, punishing route) to bring awareness to these children, and to raise funds for our core mission work.
Starting in California, and heading east, Barry is traveling 7 weeks on the road. He road through the Rockies, onto Indiana, where he met up with Ryan White’s mother, Jeanne.
He will reach Portsmouth, New Hampshire on July 21, just nine days from now! A small contingent from New England will be there to greet him. After all, it’s only 20 minutes from my house! Afterwards, we will celebrate with a good ol’ New England Clambake in my backyard. Delish!
Barry hopes you will consider sponsoring a child, just as he sponsors Mukesh. We have 70 children waiting!! To sponsor, click here: Save One Life 
Or make a donation in any amount to help us reach our goal! Save One Life, begun in 2001, has delivered over $1.5 million directly to patients in need in developing countries! No one else can claim this, and no one does what we do. We make a direct and powerful impact in people’s lives who suffer with bleeding disorders in Africa, Asia, Latin America, and Eastern Europe.
Thank you, Barry! For your compassion, fortitude and perseverance!
Thanks to gold sponsor Baxter International Inc., sponsors Biogen, Emergent, George King Bio-Medical, Hemophilia of Indiana, OptumRx, The Alliance Pharmacy and individual donors for making the ride possible and helping us gain on our fundraising goal!

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