Kathmandu, Nepal after 18 months, and still there are so many signs of the massive earthquake that rattled the country on April 25, 2015.
air quality remains poor: my throat feels raw and my eyes water. Our team wears filter
masks strapped to our faces, to protect our lungs. The city at night pulsates like a
living being: through the streets motorbikes, cars, rickshaws, trucks flow,
belching out waste, laced overhead by a gnarly grey network of telephone wires
and cables at each street corner.
all the camera equipment, and Rob Bradford (photography), Jess, Chris and I in another, so Rob can
film. I enjoy their wide-eyed first look at Nepal with all its helter-skelter traffic
previously. I first came to Nepal in 1999 for an assessment visit, then returned in 2000, when my company funded a medical conference. I was so impressed with the NHS then. And more so now. The NHS became our second program partner for Save One Life solely based on their ability to get the job done right, and fast. They are a crackerjack team and work hard to help their patients.
traveling with a film crew this time. I’m used to moving fast and ducking in and out. But
with about 200 pounds of camera and sound equipment, we have to move carefully
and cautiously. The hospital is still in disarray following the earthquake. It’s dark and uninviting. But the hemophilia treatment ward is brightly lit,
clean and orderly. No patients are there at first, and while the crew films,
we chat with the two lovely nurses.
A high number registered! About 200 make regular visits to the HTC, also a
high number. The center is now open 24 hours a day, which is excellent. They have a small
fridge, under lock and key, for factor. Inside is the Biogen/WFH donation of
Alprolix and Eloctate. This donation is absolutely revolutionizing care,
because it provides consistent product availability, which allows for planning, which leads to a
changed mindset. (I will write more about this in the August issue of PEN).
“Namste!” as we each entered. The ward was upgraded! Freshly painted, with new
offices for factor storage and for the nurses’ office; it looks excellent. A freezer held
fresh-frozen plasma, something you never see in the US; this is for patients
with rarer factor deficiencies, or for when there is no factor.
Then a patient walked in: 18-year-old Bibek, a handsome, tall young man,
slender, with an apparent elbow bleed. Despite what must be searing pain, he
smiled broadly, was calm and accepting, gracious. It’s how the Nepalese are:
deeply ingrained in each seems to be a gentle approach to life, respect for
all, and profound civility. They have much to teach the world about how to get
along with others.
HTC for one injection of 1,000 IU, not even enough for his lanky frame. And the
elbow bleed started the day before. He didn’t put ice on it because there is
none where he lives. Still he smiles; his face is placid and open, inviting.
His English is excellent.
hallway, then enter again, replay every conversation and act. We joke it’s
Bollywood and we should sing and dance our way in. Think the ending of Slumdog Millionaire! So we comply and redo the entire entry, greeting,
conversation. I ask them to include the photo of the mom who died in the
earthquake, while she was assisting in blood donations. She’s a true hero.
Ashrit. I regret that I didn’t recognize him at first. We chatted, and he
lifted his leather jacket sleeve to reveal a clawed hand: Volkman’s
contracture. Repeated bleeds for four years have left his left hand useless,
and in a permanent grasp. The saddest part is that he loves to play guitar. I
ask who his favorite guitar player is and he rattles off a long list: Jimmy
Page, Angus Young, Jimi Hendrix… “Slash?” I ask. Oh yes! He’s amazing! So we
share stories of guitar players and music, and he knows how to play Sweet Child
O’ Mine (one of my favorites). He even learned to play with one hand and had Jess and me listen to a
recording on his phone. It’s beautiful. He has talent. He also shows artwork, a
pencil sketch of a child, which is beautiful and haunting.
motorcycle? And I picked at his leather jacket. He started laughing, and I said
I know you Nepalese boys and your motorbikes! He said he used to but not any
longer. Such a sweetheart. He needs surgery. The
main problem? He has an inhibitor. Life has dealt this young man a double blow
but still he smiles and has dreams. I want to help him get surgery.
the Bir Hospital we drove to the Nepal Hemophilia Society office, in the
residential district. Some wiry teens were playing cricket in the street; birds
chirped, the sky was overcast and the air cool. Inside was crowded. They had
built out the office, including a new cold room, to store the donations from
Biogen; this means they could easily handle our proposed 4 million IU donation.
Manil Shrestha (also a patient) and his team are doing a great job. We asked questions, Believe Ltd. filmed… all good material for the documentary.
Mani suggests we go to “KFC,” which
we all think means Kentucky Fried Chicken. We scuffed across the dusty street,
to the main street, with cars, motorbikes and trucks bulleting past us. It’s
very dangerous to cross. Up the high curb (we have to help one another) and
into KFC: Kwik Food Café. I’ve eaten here before. The bathroom sported a squat
toilet, which is actually hard for patients with hemophilia to use–just think about it. Nepalese food is excellent and we down dumplings (called momo),
French fries, noodles, vegetables and Cokes. The talk is happy and light, and
everyone has a good time.
chat with Beda Raj, a board member and also patient, and hold hands, which is the custom here among close male friends. Patrick is a rising star in our community: driven, ambitious, articulate, with a kind heart and compassionate soul. He
lost his 18-year-old brother Adam and it has impacted him greatly. Afterward,
we head for the Shanker hotel, and have dinner together at 7 pm. Everyone has Everest
beer and I have wine, and we share stories from the day.
March 29, 2017
It was rainy, which was disappointing, but then the air was remarkably cleaner
and easier to inhale. We start our day in the dining room together, and I enjoy
a breakfast of eggs, croissants, muselix (delicious), fresh watermelon and
mango, and steamy masala tea. Everyone is obsessed with their photos and we compare them.
Then off to Swayambhu, the “Monkey Temple,” close
by. We draw a crowd because of all the camera equipment. The focus is entirely on Chris; making a pilgrimage to this most famous of temples, in preparation for his climb. I feel very much at peace in Swayambhu. The colorful prayer flags
dance in the wind around the stupas with the painted eyes of Buddha watching. Stray
dogs, their tails eternally curly, strut about in the rain or sleep at the base
of the stupas or even inside the arch of the little temples to escape the rain. Bold macaque monkeys leap and swing overhead, fighting with one another, scanning
for food. They are a rough lot; some are missing patches of fur, and one is
actually missing a nose. One baby has a mangled leg he drags about. Birds chirp
and somewhere a cuckoo chimes.
level, where the gift shops are. The rain is pelting but I have an umbrella and
water-proof camera. I’ve been here twice before and so just enjoy it all. Other
trekkers are here, maybe German. I’m intrigued as always by the Hindu masks on
display. Jess and I meet up and I film her spinning the prayer wheels.
wouldn’t be? He didn’t set out to make a documentary, only to climb the Seven Summits
for a cause–Save One Life. Shy by nature, he comes across as
authentic, humble, and people will be drawn to that. So soft-spoken but a core of steel!
at the temple, and candles at another temple. A monkey bolts up, grabs an
offering of food meant for the gods, and scoots away. They are fast and mischievous. There’s still
earthquake damage, manifested in cracks in the buildings and piles of bricks which is so sad at this ancient of sites. The rain came and went, as we walked about. It took a while to get the tickets, and we stood on a street corner watching all the people walking by. Women with lined faces and colorful but damp saris tried hard to sell us trinkets: bracelets, necklaces, purses. “Good price I give you,” “Madame for you?”
|Laurie Kelley with Youth Group, Nepal Hemophilia Society
|Chris infusing on a summit!|
Because he has hemophilia–a “disability.” Huh. Chris has a few things to show the guys in Antarctica.
|Waiting to see this on Everest!|
From the bottom of our hearts and hiking boots we wish to thank Octapharma for completely funding Chris’s climb, and Believe Ltd.’s documentary. While there is no amount of money that can compensate Chris for his time and personal risks, none of this adventure and effort would be possible without Octapharma’s generous support and more importantly, its belief in Chris and Save One Life. Chairman Wolfgang Marguerre has been one of Save One Life’s biggest supporter and sponsor of children with hemophilia in developing countries. He truly believes in our mission. Thank you Mr. Marguerre and all your colleagues, including Flemming Neilsen and Carl Trenz, for your help and support!
If you would like to sponsor a chid in need, visit www.SaveOneLife.net to learn more. Together we are improving lives with hemophilia…one at a time.
Month, Save One Life, the nonprofit I founded, is sharing stories every Wednesday in March to illustrate the
challenges and triumphs of children and adults with hemophilia in the
countries we serve.
you to become a champion of our cause–reaching out to family and friends to
encourage them to sponsor a child or donate to a program. We have about 30 children in need of sponsorship–please visit our website and see these beautiful children who deserve someday to celebrate too.
he was 17. At that point he had suffered so many untreated bleeds, he could no
longer walk. His mother would carry him in her arms, even as a teenager, or he
would use a wheelchair. Living in the country, he was confined at home, unable
to go to school. For activities, he played on the computer, drew and watched
$50 per month. His older brother, Sudhish, who doesn’t have hemophilia, works
as a welder to supplement the family’s income.
Usha Parthasarathy, met Rathish, she was particularly touched by his condition.
She organized a fundraiser to pay for surgery on Rathish’s knees at a
hospital 50 miles away from home. His mother used his sponsorship money to help
defray other surgery-related expenses.
for Rathish to walk again, with the help of braces and crutches. Now at age 21,
he continues to build his strength with exercises and walking every day. He is
home schooling at the 10th grade level, and honing his computer skills.
Inderjeet from India
away on February 28 from a CNS bleed. The only son of his parents, Inderjeet complained
of a headache on Sunday evening. After dinner he became sick, so his parents
made the two and a half hour trip to the hospital. The medical team determined
he had a CNS bleed and infused factor.
another hospital with better facilities–a drive through busy city streets in
Delhi–but when they arrived, the hospital did not have a bed for him. He had
to go back to the first hospital. This proved to be too much. Emergency surgery
never happened and limited factor infusions were insufficient to save this boy,
who loved art and wanted to be an engineer.
In his most recent update to Save One Life, he was grateful to his sponsor and
expressed his love for her.
—A. E. Bray’s Traditions of Devonshire (Volume II,
pp. 287–288), 1838
What is it that makes someone crave climbing hard, cold, dangerous mountains? Is it the challenge? The view? The bragging rights?
I never knew I loved mountains so much until I was well into my 40s and took up rock climbing on a whim. And that was in a gym. When I tried it outside, on New Hampshire’s Cathedral Ledge, a 500-foot sheer drop, I was hooked forever. A combination of fear, exhilaration, adrenaline, relief, and a huge sense of accomplishment flooded me. I knew very well there was a chemical aspect of this as endorphins coursed through my blood, making me feel drunkenly happy. Welcome to my new addiction.
I also knew that the intense concentration I had just experienced for four straight hours made me completely forget the world, any worries, the future, the past. Everything was reduced to, “Find that next nub to put your toe on and hang on for your life.” It was remarkably clarifying, much like skydiving, or even playing a complex piano piece. Such intense focus actually relaxes the brain when you finish the jump or performance. It’s like meditation.
And then, there’s just something inexplicable to me about rocks. I love them. I love the sight of them, color, feel. When I see a pretty rock at my feet, I pick it up to examine it. When I drive down the highway, I scan the dynamited masses on either side and imagine trying to scale them. When I am in Utah, my rock mecca, I just gape at the surreal world of red, striated rocks that reveal the history of the earth, the mesas, the hoodoos. When I get close to rocks, I feel something; energy? I know some people swear by the healing power of certain rocks. I don’t know about that, but I do know being near them makes me feel connected to earth, to life, to the universe.
|My view of Kilimanjaro August 2016|
Climbing is less about the view, and more about the journey, overcoming fears, pushing yourself to extreme limits, wringing out every ounce of strength (and oxygen) in you to see how much you can handle. It’s a psychological test set among the most beautiful places on earth.
Last summer I couldn’t wait to jump out of bed once or twice a week at 4:30 am, grab my gear, and head north to New Hampshire’s Mt. Washington for a 7-hour strenuous hike. You finish utterly wiped out, starving, grimy, sweaty, and deliriously happy. That was in preparation for Mt. Kilimanjaro last August.
Now I am training again—for Everest base came, in two and a half months.
I’ll be following in the footsteps of mountaineer Chris Bombardier, person with hemophilia B, friend, and fellow board member of Save One Life. Chris also loves mountains, and he is lucky enough to live in Denver, and grew up among rocks. Chris is attempting to complete the Seven Summits, the highest mountains on each of the seven continents. He’s completed five to date (though has “temporarily” been denied access to Mt. Vinson in Antarctica due to his hemophilia). Well, when he was denied, he thought, “I’ll show them! I’ll just climb Everest first!” So Chris will be attempting to summit Everest in early May!
If successful, Chris will become the first person with hemophilia in history to reach all Seven Summits.
He’s done five of them: Kilimanjaro (Africa), Aconcagua (South America), Denali (North America), Elbrus (Europe), and Cartstenz Pyramid (Australia). Now, just Everest in Nepal and Vinson in Antarctica remain.
You may know Chris, a rising star in the hemophilia community. I first met Chris in 2011 at NACCHO, when he was about to climb Kilimanjaro with his uncle, and I was about to climb it a few months after him as a fundraiser for Save One Life. He shared his dream and I heartily approved and told him I would help if at all possible. I’ve followed each of his summits; we helped fund one of them. When no funding seemed apparent and he would get downcast, I told him to stay positive, it will happen; nothing will stop someone with such big and noble dreams. And sure enough, the funding for Everest was daunting, for anyone but especially a young man from Denver. But luckily, I’m not the only one who believes in Chris! Octapharma, a privately owned Swiss company that manufactures blood clotting medicine, funded Chris’s fees and travel entirely!
Best of all, this historical event will be captured on film and made into a documentary by Patrick James Lynch, another rising star in hemophilia, and Believe Ltd.
|Chris on Aconcagua, with picture
of Brian, a suffering child with hemophilia,
And there is a higher goal, beyond challenging ourselves and setting records in the hemophilia community. Chris wants above all to highlight the gaping disparity in treatment between the developed and developing countries. And as you know, this has been a passion of mine for the past 20 years. I’m thrilled that Chris cares as much as I do about changing the lives of 300,000 people worldwide with no access to factor. In fact, Chris is betting his life on it: a climb up Everest is difficult and dangerous. Chris is taking these risks because his reward is that the spotlight will be put on those who suffer even more.
Save One Life has been working in Nepal for years and we sponsor over 80 people there with hemophilia. We helped provide funding to rebuild homes post-earthquake, and LA Kelley Communications has helped pay for surgeries. It’s a country dear to us all.
So why do we climb? To feel rare emotions—euphoria, extreme exhaustion, deep joy, eternal gratitude. To overcome out fears; to push ourselves to the limits; to do something with lasting impact—a historical climb, a movie about hemophilia; and hopefully to change the lives of our fellow community members who need our help.
And me? I’m going to base camp at 17,600 feet after a nine day hike through stunning vistas (with yaks!), spending two days with Chris, then descending, leaving him to prepare for the climb about a month afterwards. I’ll have some stories to tell, and prayers to leave for my friend, one of the bravest guys I know.
Follow Chris’s preparation and climb on his Facebook blog Adventures of a Hemophiliac.
New York City on September 29, perfect for a fall kick-off and a good reason to
warm up with friends, colleagues and a celebrity to honor 15 years of Save One
my idea to start a nonprofit to help the world’s children with hemophilia who
live in poverty had been kicking around for at least two years. We are now up
to over 1,500 served over 15 years, and we have great plans to expand our help even further.
in New York; to give credit where it is due, it was a New York mother of a
child with hemophilia, Lisa O’Connor, who wrote to me back in 1999, on a piece
of yellow-lined paper (yes, people did that at one time!) to suggest we start a
Save the Children-like program. I loved the idea, and the letter coincided with
a trip to Pakistan, in which I sat in the home of an extremely poor family:
two rooms, no kitchen, no plumbing, no electricity, two small children with
hemophilia. The father simply wanted extra money each month to send his son to
a good school, where he would be protected, and learn English, to get a good
job. Then he could buy factor. The cost? $20 a month, he told me. The idea
became a plan.
and colleagues came out to share our 15 years. I saw so many long term
community friends, some going back 20 years!
|Cyclist Barry Haarde|
Held at the Manhattan Penthouse, high
above the bustling city below, we gathered to have a lovely dinner, distribute
awards and honor our volunteers and supporters, and to welcome two very special
again the amazing Barry Haarde, for his fifth cross-country cycling odyssey to
raise funds for Save One Life. The 2016 journey took two months this time, and
saw Barry traverse the US from west coast to east coast, and then from north to
south! I managed to hop off Kilimanjaro in time to fly to Key West, the most
southern point in the US, to welcome Barry on Route 1, mile 0. Barry takes it
all in stride, but his efforts are Herculean. He has raised awareness as well
as over $200,000 for Save One Life over his five trips, and sponsors a child
with hemophilia from India.
|Laurie Kelley, Usha Parthasarathy, Martha Hopewell|
Usha Parthasarathy received our
Inspiration Award. Usha is a dear friend and also volunteer and expert advisor
on hemophilia in India since Save One Life’s formation in 2001. Usha helped
Save One Life to organize and launch its sponsorship program in India. In 2009
Usha joined Save One Life as India program coordinator, assisting with growing
and managing our largest country, with 25 program partners and more than 830
current and graduated beneficiaries. She works tirelessly in a completely
volunteer role. Usha lost both her father to an intracranial bleed and her baby
within two years. She left a career as a national newscaster in India to devote
her life to helping those with hemophilia, and became development vice
president for the Hemophilia Federation (India). Her second son, Sudharsan, born
in 1981, is now a post doctoral researcher in the hematology division of
Children’s Hospital of Philadelphia.
member, friend and fellow-mountain climber Eric Hill, COO of Diplomat, who
sponsors 31 children, and has organized our mountain climbs to raise awareness
and money for Save One Life. His efforts have raised over $150,000 for save One
Life and Eric recently has made the first donation to our endowment fund.
|Miahi of Romania|
After dinner, we were entertained by
Mihai, a lovely young man with hemophilia from Romania. He and his mother flew
all that way to attend, as our guests. Handsome, slight of build and tall, he
was introduced by my long-time friend and mentor Adriana Henderson of North
Carolina (Romanian by birth) who has devoted her life to helping the poor and
suffering in Romania with hemophilia. She explained how Mihai excelled at
playing the piano, despite the limited resources of his family, and frequent
bleeds in his hands. Mihai played several beautiful classical pieces, and
ended with Chopin’s Nocturne Op. 9 No. 2, one of my favorites.
Best of all, Mihai’s sponsor, Reid Coleman of North Carolina, attended and was able to meet his beneficiary of many years!
belonged to Tony Fernández,
former shortstop for the Toronto Bluejays, and for one year, the New York
Yankees. Tony has been a long time friend to the
hemophilia community in the Dominican Republic. His Toronto Bluejays teammate
and best friend, Damaso García, has a son with hemophilia. When Damaso’s wife
Haydée De García Benoit, founder and president of Fundación
Apoyo Al Hemofílico (FAHEM), the DR’s national
hemophilia organization, asked Tony to attend their first camp in 1999, Tony
gladly said yes. The children were thrilled to have a national hero spend the
day playing baseball with them. He has since attended three camps, now called
Yo sí Puedo! (Yes I Can!) and one of the best hemophilia camps in the world!
League Baseball career, starting in September 1983. He signed on to six teams,
setting a nine-year record for shortstops. He was awarded four consecutive Gold
Glove Awards, from 1986 to 1989, and was also named to five All-Star teams. Today
Tony is an ordained minister and founder of the Tony Fernández Foundation,
which works with underprivileged and troubled children by nurturing and developing
them through counseling, education, training, and physical and spiritual
defeated early in life; his father was a star player, but he could not even
play baseball. Tony counseled him and encouraged him to find some other way to
participate other than actually playing. The encouragement took hold. Today
Damaso is a national sportscaster for the Dominican Republic and the entire
nation tunes in to him at 5 pm daily.
Tony reminded the audience that to give is to receive, and that the world needs
our help in these troubled times. He urged everyone to pick up the envelop in
front of them, and to give. His authority, his devotion to children, made an
impact. We raised over $4,500 right after his speech, with 19 more children
pledge for sponsorship.
offices, with David Kyne, president and founder, and Save One Life board
member, for a seven hour strategy meeting. The next 15 years will see tremendous
growth of Save One Life, and many more children reached, and lives changed.
we stay the course, the unthinkable might happen, yes, together we can bring
hope to the hopeless, just be faithful to the vision given to you by God and
He will find a way to bring it to pass.” Tony Fernández, major league
ballplayer, minister, founder of The Tony Fernández Foundation