Hemophilia History Made: Everest Summit!

Mountaineer Chris Bombardier

He did it! History made!  Chris
Bombardier, the young man from Denver, Colorado with hemophilia B, around 10 pm last night became the first person in history with hemophilia to summit Mt.
Everest! Everest alone is an incredible challenge due to the high altitude,
which kicks in on the nine-day trek to base camp at about 10,000 feet. Everest
is 29,029 ft. Chris has hemophilia,
and faces prolonged bleeding from injuries. He uses an extended half-life product,
which will help increase the length of time factor circulates in his blood. So
many have asked how he is protecting himself: factor, prophylaxis, oxygen
tanks, and great sherpas to help guide him. It takes a special kind of person
to dream of this, train for this, and take on this. And he is doing this not just for personal best record or even to make history, but to shine a spotlight on the huge disparity in care between hemophilia treatment in countries like the US and in countries like Nepal.

Read from his blog, Adventures of a Hemophiliac. What does a guy with hemophilia think
and feel before undertaking a history-making adventure?
Infusing on a rock!

TUESDAY May 16



I finished my last infusion at base camp and tomorrow morning
our team will begin our summit push. I’m not exactly sure how to describe the
feelings I am currently having. I’m excited, nervous, scared and hopeful all at
the same time. I know the next week of my life will be incredibly hard, full of
moments of questioning my sanity and of overwhelming joy. I’ll be able to
witness some of the most amazing views on this planet and also be more
exhausted than I have ever been.

Through the hard moments and the amazing moments I know that I have a family
that is supporting me no matter what. My beautiful and strong wife, my
incredible parents, aunts, uncles and friends will be with me ever step of the
way. I also know that I have my bleeding disorder family from all over the
globe cheering me on and that makes me feel strong.

As I pack my gear and put my boots on in the morning and walk into the [Khumbu]
icefall with only the light of my headlamp showing the way, I’ll think about
how fortunate I am to be able to choose this life and this adventure. Choose to
try and push myself farther than I could ever dream and step on the top of the
world. I’ll also think about all my blood brothers and sisters that aren’t able
to have that choice…. yet. I’ll remember that by standing on the summit and
by raising awareness about hemophilia and disparity in care, we can change that.

The hope is that we can summit on May 22. While I am challenging myself on the
mountain I want to challenge all of you. We already met the goal of finding
sponsors for every child on the Save One Life,
Inc.
 website. 55 kids have now been sponsored since I began
this adventure! Let’s not stop there!

The climbers promoting Save One Life
I would love to see the fundraising page for my Everest climb
reach $8,848, the amount of meters above
sea level the summit reaches. I won’t know if we’ve reached that goal until two
days after the summit and I reach basecamp but that would be icing on the cake.
Those funds will help those with hemophilia in Nepal continue to rebuild after
the earthquake. It will help them climb their own personal “Everest”
and work towards living the lives they choose. I would also urge you to reach
out to Save One Life and put your name on the waiting list to sponsor a child.
There will be more children added soon and they all could use our help.

Thank you all for the support and hopefully in few days no one will be able to
say someone with hemophilia can’t climb Everest. 

Navigating the Khumbu icefall: first steps to Everest

And thanks to Octapharma for sponsoring Chris’s historic
climb!
Visit our Gallery to see the trek to base camp!
Visit our Gallery to see our visit to Nepal’s hemophilia families
Read more about our Nepal trip here!
“Climbing, simply and joyfully, is the way I love the world.” Steph Davis, High Infactuation: A Climber’s Guide to Love and Gravity

Searching for a Stone and Unexpected Luck


Thursday
March 30, 2017
This was easily our best day in Nepal, packed
with adventure, home visits and a deep appreciation of Nepal, its people and
the Nepal Hemophilia Society. Manil showed up with two vans: the production
team of Believe Ltd—Patrick James Lynch (director), David Beede (sound), Josh
Bragg (video) and Rob Bradford (photography)—pile onto one van, but first, they
tape a GoPro to the front of the van to capture the frantic, physics-defying
Kathmandu traffic. Chris, Jess, Manil and I get into the other van and off we
go. We leave the capital area and venture into the countryside, where the urban
concrete jungle turns to trees and farms, cattle and hay. We’re on our way to
see Bibesh, a 19-year-old with hemophilia and a beneficiary of Save One Life. It
rained last night and while creeping uphill on a dirt road, our van gets stuck
in a muddy washout. The production vans zips by while the guys laugh at us and
disappear around a hill. We all have to get out. We grab our bags and the bags
with gifts and start to walk. Around the hill? The production van, also stuck.

Manil tells us it’s about a half hour walk to
Bibesh’s home. The guys are carrying in total about 130 pounds of equipment:
cameras, batteries, cases, microphones. Josh props his enormous video camera on
his shoulder practically the entire walk. As we walk, the Believe crew
interview Chris and Mani. Jess and I hang together as we walk. The road is
thick with mud, and luckily we are all wearing our hiking boots. But it’s
pleasant: the air is moist and refreshing, and the view is stunning. Tilled,
green hills, brick cottages, cows. The valley stretches before us, decorated
with trees and crops. Somewhere far away we can hear music, and strangely, a
cuckoo!

Now we walk down a hill, slipping in the mud.
It’s here that Mani tells us he will need to wait while we go on. He is
limping, and his arm is in a sling. I’m sure he must feel pain but he doesn’t
complain. After we slip down the hill, we stroll out
into a huge green field, following a trail. We’re in the middle of nowhere it
seems as the village we just went through recedes. Down the trail, we have to
cross a stream, and the only means is to balance on a plank. Yes, a plank!
Patrick goes first, then me, then Jess, who clowns around. Then up a hill, very
steep, and it leaves us huffing and sweating. We come to a cottage, but it’s
not Bibesh’s so on we go. It’s getting to be surreal, that this young man has
to overcome roots, vines, mud, hills and a very long walk, just to get to a
bus, that would then take him another hour to get to the hospital to treat a
bleed. And none of them complain, or curse their fate. Ever. They hope—hope
that we can help them, and they ask. But they don’t demand, argue or get
vengeful.

At last we reach Bibesh’s home, high on the
hill. It’s made of brick, but has obvious cracks in it from the earthquake. The
porch is propped up with poles. All around is dusty earth. In fact, they don’t
live in the house but live in a shed, and are building another home up another
hill. The guys get their cameras and sound gear ready. Bibesh is 19, and
actually just had a birthday yesterday. His mother Uma is present, and his
81-year-old grandmother, Bed Kumari, who is as frail as a little sparrow, with
deep set eyes, skin the texture of leather, with many deep creases. Her face is
remarkable, and I photograph her. The lines are like chapters in a book, and
she has a long, amazing story to tell, if only she could. We have a shocking
moment when the great-grandmother appears! She’s a bit wild, with grizzly hair,
missing teeth, rail-thin body, and darting eyes. She speaks in Nepalese very
loudly, and the family motions that she’s hard of hearing. We all get a kick
out of her.

The family is very poor. The father works in
a shop, and earns about $180 a month. The sponsorship he gets through Save One
Life is $24, so it definitely helps. They own their home, which is good, but it
is in bad shape now.
Bibesh himself is a handsome young man, well
dressed and soft-spoken. He speaks English pretty well. He gives us a tour of
the property. We go inside the condemned house, which is more narrow inside
than it looks. We have to duck; the stairs are creaky and threaten to give out.
It’s dusty and damp, with a concrete floor, no screens in the windows. Chris
goes upstairs where the bedrooms are, and Bibesh shows us how the main beams in
the house split under the stress of the quake. Cracks appeared in many of the
bricks too. Outside, we take a short trip up the hill some more and see the new
house under construction. While they use bricks, the mortar seems inadequate to
keep the bricks together. The family is proud to show us a beautiful brick
temple they are also building.
The mother kindly brings out refreshments,
and as I take one with my hand I burn it—ouch, I shout! Hot tea!

Later, I sit near the grandmother, who
watches me, and we hug and she nestles into my arms. She is so thin—you can
feel all her spine and shoulder bones. Such a lovely old woman. I wonder what
she makes of all this: cameras, strangers, interviews.

When we leave, Josh gets the drone ready to
take aerial photography. It sounds like a huge bee buzzing overhead. Going down
the hill proves to be just as challenging as going up. We slip and slide our
way down the hill, back to the stream. Chris and Bibesh chat as they descend,
with Josh filming.

Manil waits for us by the roadside; on to the
next home!

It’s a one hour ride to see Om Krishna, a
17-year-old. We stare out the window and see miles and miles of concrete
bricks. Made right from the mud, the bricks are formed, stacked and then
carried on the backs of men, to make long walls of stacked bricks to be sold.

Beyond the brick-making farms, we approach Om
Krishna’s town. The neighborhood is pretty, with some big homes. Om Krishna’s
home is also big, but uninhabitable—earthquake. The family moved from it into a
shed, something we would use to store gardening tools. It really seems wrong
that they should be living there, especially so long after the quake. Not only
does the whole family turn out but the whole neighborhood! Children spring from
nowhere and smile shyly and hide behind adults. Patrick and team waste no time but get right
to work setting up the equipment and proper places to film.
While they interview, I hang out with the
adorable little cousins. Jess and I brought school supplies from Colorado, and
puzzles and punching balls donated from the New England Hemophilia Association.
These were all big hits! Om Krishna is a handsome young man, who speaks English
almost perfectly. He’s a good student. He confides in me after the interview
that he worries about continuing school, as his father is a driver and doesn’t
earn much.

One thing Om Krishna is rich in is family.
It’s obvious he is surrounded by love: a beautiful, elegant mother, who,
despite their struggling status, walks with dignity and grace, her sari gently
flowing. She beams at her son. So does the grandmother, with a face etched with
years but with a warm smile for this special young man. 

Sadly, Om Krishna’s little brother died of an
untreated gastrointestinal bleed. He still has a hard time talking about it.
This is difficult in some cultures. When you have one child with a disability,
it’s considered unfortunate. Two? That’s a curse. The family could risk being
ostracized from the neighbors for something like this.

After our visit and interview we pile back
into the vans and head to the last house of the day: the Rajbchak
family. After another hour long drive (poor Jess kept feeling car sick), we
arrived, and pulled up alongside a roadside shop I know well. Behind the front
counter was Jagatman (age 26), a Save One Life success story. Jagatman owns
his own mobile repair shop, after receiving training funded by Save One Life,
and then a microenterprise grant.

When I stepped out of the van and up to his shop, he smiled broadly
and we both said namaste. He looks great! Confident, strong, which is
remarkable as he has an artificial leg, also a gift from Project SHARE. The
shop is perched at a cross roads and has an open front that displays watches,
toys, picture frames and candy. Soon his brother Jagatlal, who goes by the
nickname “Monsoon,” appeared. We hugged each other (after all, we are friends on Facebook now). Monsoon speaks English fluently and translated for us.
Again, Patrick and the Believe team got right to work and right there, in the
middle of the street, after pulling up chairs, began interviewing Jagatman. A
crowd gathered. Patrick asks excellent questions and gently guided Jagatman and
Monsoon through what is it like to have hemophilia in a developing country.

Because the shop is in a prime place, a bus stop, there was all kinds
of noises emanating from the street: motorbikes, cars and a really loud three
wheeled motorcycle that had metal pipes on it that obviously rattled and banged
each other while it took the corner near the shop. Patrick almost packed it in
then!
After the interview, we walked down the streets, with Josh, Rob and
Dave filming. Somewhere electronic music from a dance club was playing, so
loud! It’s a wonder they could even film.
The boys’ house was completely destroyed in the quake. It’s now just a
pile of bricks. The family lives across the street in a shed as well, much
bigger than the others I saw. Outside the entrance of the shed, the boys’
mother waits, ready to offer us hot tea. So nice! We filmed it all and finally
had to call it a night. It was pitch black now, and we still had an hour ride
ahead to get back to the Shanker Hotel.

Going back to the street corner
store, we said goodbye to Jagatman. The boys’ father bought a fresh yogurt
drink from the store next door. It was refreshingly delicious. The Nepalese hospitality
and civility never fail to amaze me. Here’s a family with two boys with
hemophilia, one who lost his leg, and a family that lost it’s entire house, and
they are buying us yogurt drinks!

We are
thoroughly exhausted when we drive back. Jess is the first to fall asleep in
the van, then Chris. It’s emotionally draining to visit, view and hear the
stories of loss, and wonder how these families find the faith, will and
reserves to continue.

But I got
one piece of good news that day: the 4 million IU donation of factor just got an
upgrade. 5 million IU, the largest single donation in Nepal’s history. Thank you
Octapharma. Just made my night.

“To find god while searching for a stone.” This Nepalese proverb is used to describe unexpected luck.

Aim to Fly and Touch the Moon

Udeshya ke linu, udi chhunu chandra ek. Aim to fly and touch the moon together.

Nepalese proverb

I’m back in
Kathmandu, Nepal after 18 months, and still there are so many signs of the massive earthquake that rattled the country on April 25, 2015.
The
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.

I’m here with the crew from Believe Ltd, who will be filming hemophilia B patient Chris Bombardier as he meets with the Save One Life program partner, the Nepal Hemophilia Society (NHS), and patients, and prepares for his Everest attempt. Chris’s wife Jessica accompanied him and will trek with us to base camp. She and I will stay two nights, then come back to Kathmandu while Chris stays another month, acclimating for the big climb. Should Chris summit, he will be the first person in history with hemophilia to conquer Everest. With
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
and humanity.
First stop today, Tuesday, March 28, is the Bir Hospital, where I’ve been three times
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. 
It’s different
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.
I learn there are 573 registered patients out of an estimated 2,500.
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).
The nurses slipped silk scarves about our necks and greeted us with
“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.

We chatted with him and learned he had to travel 3 hours to reach the
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.
Patrick asks us to redo the entire visit for the documentary! We have to regroup in the
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.
I chat with another young man there, who I had met in 2015:
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.

To lighten the conversation, I ask (on camera) do you… ride a
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.

After
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.
On the way back I witnessed a tender moment seeing Patrick
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.
Wednesday
March 29, 2017
Today was filming at the temple day.
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.

I eventually walk up to the next
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. 
Chris is a little self-conscious with a crowd staring, cameras in his face and a boom mike over his head, but who
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!
I watch the Nepalese light incense
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?”

Finally, Patrick, always with a smile and optimistic air, has our tickets and we enter. Old, beaten, the square is a relic of palaces and princes from long ago. Piles of bricks mark the way, old woman sit on wet rugs to sell souvenirs, and hundreds of pigeons swarm one small square. Rob is fascinated with them and takes excellent shots. A massive stone carving of Kali Bhairav dominates anther square, and it’s stunning. Bhairava is called a protector, as he guards the eight directions of the universe. In all Hindu temples, there will be a Bhairava idol. The Hindu faith is very complicated with gods taking all sorts of forms; but the stories are beautiful and the god manifestations are so interesting.
Despite all our differences in culture, religion, ethnicity, location, we have one major uniting thing: hemophilia. Chris, as a person with hemophilia from the US, represents the ultimate life that the Nepalese could one day have: freedom from disability, life with factor available, hope to accomplish their dreams, which could be as basic as just going to school or university. Chris’s dream is to reach the summit of Everest and eventually finish the Seven Summits. I think he embodies the Nepalese proverb “Aim to fly and touch the moon together”, or in this case the summit of Everest!

Off to Nepal.. and Everest

I’m sitting at Gate 11, Terminal E, waiting for my flight to Nepal, and just remembered I didn’t lock either of my checked bags. I never forget something like that. I’m a bit distracted: my head’s on the upcoming climb to Everest base camp. Everything else is packed: climbing gear, boots, trekking poles, layers and layers of clothing (base layer, mid-layers, outer shells), medicine to cover all typical ailments including altitude sickness and bronchial infections, expedition sunglasses, hats, bandanas, gloves and liners… somehow it all fit into the North Face Base Camp bag with room to spare. I filled that room with donated stuffed animals for the kids in Nepal. hopefully it will all be there when I arrive in Kathmandu!

How are the kids in Nepal? We have about 100 of them registered with Save One Life and track their progress through our program. Nepal is one of the world’s poorest countries, and yet it has a stellar Nepal Hemophilia Society run by people with hemophilia. For the beneficiaries of Save One Life, we check to see if they have enough income, are in school, and whether they get treatment for their hemophilia. We have many prominent sponsors in our community who fund these families.
Laurie Kelley with Youth Group, Nepal Hemophilia Society
September 2015
The country suffered a devastating earthquake on April 25, 2015; several members of the hemophilia community died. The hospital was damaged; homes left in piles of bricks. I toured the earthquake damage when I was there in September 2015, and realized in the global hemophilia community there is no emergency response protocol or team. It doesn’t happen often, but in earthquake prone areas like Nepal, it would be a good program to establish.
See my trip to Nepal 6 months after the earthquake here. 
I’m looking forward this coming week to meeting our kids again, seeing what the needs are, how they have managed. We raised funds shortly after the earthquake with the massive help of the Mary Gooley Center in Rochester, New York, to help with housing and necessities. Patrick James Lynch and his team at Believe Ltd. is coming on this trip as well to make a documentary about life in developing countries, through the eyes of Chris Bombardier, a young man with hemophilia B from Denver, Colorado, who will be the first person with hemophilia to attempt to summit Everest!
I’ll be with Chris this week as we tour homes and the hospital, and visit the earthquake areas. Then Chris, his wife Jess, photographer Rob Bradford and I all head out for Everest base camp on April 2 with renowned guide Ryan Waters of Mountain Professionals. Ryan has accompanied Chris on four of his Seven Summits. Everest will be Chris’s sixth summit… and that would leave Mt. Vinson in Antarctica.
Chris infusing on a summit!
Chris would have summited Vinson by now, but he was denied access! Why?

Because he has hemophilia–a “disability.” Huh. Chris has a few things to show the guys in Antarctica. 

Chris also has a few things to show his peers in developing countries. The mountain is a metaphor for overcoming any challenge. You can’t get anywhere in life unless you first set your sights on a summit; get the right equipment; train, train, train–success is hard work; map your route; get a guide; then go.
Waiting to see this on Everest!
Go Chris! We wish you success and safety, and everyone thanks you for your heroic efforts on behalf of people with hemophilia everywhere!
Sign up to get notifications about Chris’s historic here!

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.

Nepal Part 3: “You’ve Been Saving Us”

Was it the
altitude? At 4,430 feet, being in Kathmandu, Nepal is  like being in Denver. It’s enough to slow you
down and dehydrate you if you are not accustomed to it. But I thought just do it. Go to see the famed “Monkey Temple.” Wednesday, September 2, was my day off.
I took a taxi over very bumpy, twisting roads where vehicles darted madly around us like metal dragonflies. Cars and motorbikes come
within inches of one another and somehow avoid accidents. The driver offered to
stay and wait an hour, which is all that it took. I recall being here in 1999, but with the April 25 earthquake, this World Heritage Site is in shock. The earthquake caused extensive damage to the temples and buildings. Dusty red bricks were piled up, or avalanched down stairs. Temples had huge cracks
in them, with plaster curling off them. Rhesus monkeys scooted up the sides of the
temples and into the doorways to steal the food offering left by pilgrims. Incense
mixed with acrid odors. And above it all, the eyes of Buddha stare down placidly and eternally from the highest temple.
Thursday September 3, 2015
Today I met
with the beneficiaries of Save One Life and presented their money to them.  The families were waiting for me and Laxmi, and I
smiled and waved at them when I entered, being casual so they would feel comfortable. Many
smiled back. The logistics were wonderful: a beautiful small stage,
bedecked in red; a big sign announcing Save One Life Fund Distribution. So many
young boys and older boys and families showed up.
We finally got settled, and the
ceremony began; there were many speeches and welcomes. I recall
Beda, man with hemophilia and president of the Nepal Hemophilia Society, said to the audience, “Pain and hemophilia are synonymous.” And then, “My mother used to
weep a lot,” as he
recounted his own childhood without factor.
Eventually we had the families
speak, and they did, from their hearts.
Mrs. Chaulagain gave a speech about her two sons with hemophilia, Pranit  and Pratik. There was domestic violence,
Laxmi translated for me. Her husband used to beat her; how
dare she provide not one but two sons with a chronic disorder for which there was
no treatment! He eventually left. They lived in poor conditions, and she
struggled to raise two boys. She thanks Save One Life and said she benefited
from the program and to keep it going a long time!
One father stood
and said, Our government won’t give treatment to us!  He said all
the hemophilia families are happy with Save One Life. They use the money for
school fees.
Mina has a son
with factor VIII deficiency; she is very happy with the support from SOL. Her
husband lives in another country, trying to earn money to send to them. So this
really helps her.
Then Nawraj, a
young man, 18, spoke: he said it was difficult to have
hemophilia during exam time (which is much more stressful in these countries
than in the US). He thank us for  Save One Life. He described his
pain, bleeding at night, and sometimes felt it was better not to have been born
than to be born with hemophilia. He lost a job due to so many bleeds. “Our
government has not recognized us,” he lamented, “because outwardly we look normal, so they
don’t pay us attention.” His speech was so impassioned about suffering. “You’ve been saving us,” he said. “It’s
because of you. I want to say more, but I cannot express it, the level of pain
I felt.”
Then Nawraj sang
a song that he composed. It was mournful, deep. Loosely translated, he sand, “I’m living alone, crying alone. Because of you, hemophilia…the pain is too much to bear! I’m sad, crying!”
And remember, on top of all this, these families have suffered through a tremendous earthquake that destroyed many of their homes! 
After all the
speeches came questions about hemophilia, which Ujol kindly answered. Then the ceremony:
we had gift bags for all the kids, courtesy of all the give-aways from NHF just
recently. Yes, I shamelessly confiscated about 50 bags from one homecare company, squeezy
toys for the kids veins from another.
The kids loved their
gifts. The older ones got t-shirts with hemophilia slogans on them (another involuntary
gift from yet another homecare company!). And each child received their annual
funds from Save One Life, about $240. For some this is a lot of money.
Then I gave a
speech! I started by asking what the highest mountain in the world was. Of
course they knew; it’s right in their country! Sagarmatha, better known in the
West as Mt. Everest. And I shared the story of a young American man with
hemophilia (Chris Bombardier) who plans to climb that mountain. We talked about
what’s possible, even without factor, and what’s possible with factor. Dreams,
goals… and never give up. I asked many children, What’s your dream? We went around the room asking each child: Engineer,
musician, teacher… they all had dreams. I told them we want to help make their
dreams come true.
Lunchtime was a
buffet of delicious local food: rice and chicken. The children played with
their new toys, and soon, the families dispersed happily. I too went back to my
hotel, happy, moved. Dedicated to these fine families.
Friday September 4, 2015
Today Laxmi
picked me up and we drove back to the NHS office, through the blackened air. The pollution in Kathmandu is deeply unhealthy; I often felt like I was hitched to an exhaust pipe. About 33% of the population wears surgical masks outside, and eventually I did too.
Inside the office was
a room full of wonderful, handsome young men, all ages 21-35. I was surprised
to see Deepak Neupane present; his eyes lit up when he saw me. I first met him
in 1999, when he was only 12 years old, and severely crippled. He became the
poster boy for WFH, and to this day they still use his image. He has
his hurts, is stoic, not overly friendly.  But Deepak is married. It was a happy reunion and he says he
remembers me.
One of the boys,
Raju, with a shock of dark hair, said, “Ma’am, I have to tell you this. You look like Barbie
doll!”  The boys all laughed.
I furiously took
notes as they spoke, while Laxmi recorded their names and ages. At the end,
when they had finished, I told them my name (they all knew) and said, And I am not going to tell you my age! And the
laughed in return. 
Durga Datta
Lamsal, age 27, a government employee, is the chair. He’s an impressive young man , soft spoken, a rising leader,
mature and responsible. I met Ashrit BK, who has an  inhibitor, 26 years old. He received a scholarship from us but is not attending now due to
bleeds. His left hand appears to have Volkman’s contracture.
John Bhuyel–who dared to sit in front of me with a NY
Yankees hat on–dreams to be a computer engineer and used my analogy from my speech about having dreams.
 I
learned that the Youth
Committee members are elected  with two-year terms. They organize a blood donation
camp twice a year. They are primarily social: sharing each other’s pain and what happens to each
other. They hold a Youth Camp annually, just the guys, usually for 5 days, and
they have lectures and do social things. This year they visited the mid-Western
region and had medics come lecture. 

 
When I asked if they did physical therapy at home, the whole room groaned and
eyes rolled. Oh, I hit a nerve. I felt like the mother asking her sons if
they made their bed or did their homework. Yeah, they know what to do but often “forget” to do it. Boys are the same the world over!
One sensitive
subject was marriage. In Nepal, arranged marriages are still common. What prospect
does a young man have to marry, when he is poor and disabled?  Jagatlal (“Monsoon”) is married but his was a love match.
They all agreed it was difficult; the girls often leave them when they see how
hard it is for them to have hemophilia. Krishna, a handsome young man with
large, soulful eyes, told me his girlfriend left him. It hurts a mother, all
mothers, to hear this about a young man.

To break the
increasingly somber mood, I brightly suggested a “Love Program” for the Youth
Group and they burst out laughing. How the Nepalese love to laugh!

Raju said Save One Life  helped him a lot. They were all very grateful for our
help.
At the end, we
shot some video of the boys telling their story of the earthquake, which was
emotional. Raju confided he was nervous (I think afraid of becoming too
emotional) and he talked on and on cathartically. His parents are
still living in a tent four months later.  
I learned that
they were coming back from camp when the earthquake struck. On the bus, they were
frightened; they saw people crying, and weren’t sure at first why. 
Then we did a
group shot, me and the boys. I gave them all my business cards, told
them they were the future leaders of the Society so learn leadership! And to be
mentors for the young ones, who need them. They presented me with a beautiful wall hanging of Buddha.
The NHS and I had a farewell dinner at 7:30 pm, and it was a relaxing end to the work week.  By 9 pm I was tired; we exchanged the gifts, and
Beda walked me from the hotel down to the main street so I could get a taxi. He
is disabled, and yet never complains. He rode in the taxi with me, so I would be
safe. He is a man of few words, but confided, You inspire me. I admire all your
work for all the people with hemophilia around the world.
Coming from him,
it was one of the highest complements I had ever received.
Saturday September 5, 2015
I awoke at 4:15
am, after waking up off and on since 10:30 pm, but it was overall a good sleep.
I hurriedly dressed. I pride myself on being
punctual and responsible. I tiptoed to the lobby, awaking the poor guys on duty
who were flopped on the lobby couches. And waited in the lobby for my ride. One
of the young managers, tall, thin and bespeckled, asked who I was waiting for? When
I replied The Mountain Flights tour, he said the ride was coming at 5:45
am
. I could have slept another whole hour!
Mt. Everest (Sagarmatha) in the background

I went back to
my room sheepishly, lay down and actually fell asleep at some point.  At 5:30 am,
back in the lobby, and the ride appeared. The trip to the airport was fast, and
the wait was until 7:15. Finally they
called our flight– Buddha Air 101, and I was hurried to the crowded bus which
took us to our plane. I didn’t expect much from a quick chartered flight but
the plane was pristine. We each got a window seat. Soon
we were aloft, and as we pulled away from Kathmandu, I saw the gray, dirty air,
which left the surrounding hills only blue silhouettes, become clearer and
cleaner, and the land becoming green with rolling discernible hills, dotted
with colorful pillow-candy colored houses. We were finally aloft, 22,000 feet
and within 20 minutes the Himalaya were in view.
There are no
words to describe how you feel. Your heart leaps with awe, with love for these antediluvian
guardians of the world, formed in the violence of the birth of a planet. The
first jutted straight up above the clouds like a sentinel, far away, like a
warning to be careful of the approach of the others. They almost seemed to have
personalities. They were majestic, powerful, magnetic. Then there were more and
more. I felt like I
was gazing upon the Gates of Heaven. 
A silence fell on the
plane as we stared at the snow giants. Soon, mighty Everest itself. Distant,
remote. I cannot  imagine what it could take to climb it and felt the urge to go to base camp some day!
When the mountains all
came within distance it was too much to process. The sharp drops, the edges, the
crevices, the seracs. One after another and another. Oh, they are just rocks,
but what beauty! What
spells do they cast over us that suddenly make us want to be there, climb them even
though we know we would put our life at risk?

All too soon we
had to return. That evening, I boarded Qatar Airways and left Nepal for the other side of the world.

See the full Gallery of photos of Nepal:
https://lakelley.smugmug.com/InternationalTravel/Save-One-Life/Nepal-2015/51907135_ww8cL6#!i=4344863638&k=3hmP65P

Great Book I Just Read
Savage Summit [Kindle]
Jennifer Jordan
K2 remains the most dangerous mountain in the world, with a death rate of 25%. Until 1986, only men had summited the Savage Summit. In this book, Jordan chronicles the lives of five women who made mountaineering history: the ones who summited K2. Ninety women have scaled Everest; of the only six women who summited K2, three lost their lives on the way back down. I worried about this book being a glorification of women who climbed K2 (Alison Hargreaves was mother of two children under age 6 who died after summiting), as her sympathetic and rather feminist intro set the tone. But I was impressed that Jordan shifted into journalist mode and objectively examined the lives, loves, passions and mistakes of these unmistakably courageous, complex and yet sometimes myopic, women who were compelled to risk their lives… and often lost their lives in pursuit of a dream. Four/fives stars.

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