Save One Life

Searching for a Stone and Unexpected Luck

Laurie Kelley April 9, 2017

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

Laurie Kelley April 2, 2017

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

Laurie Kelley March 26, 2017

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!

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.

Wednesday’s Child*

Laurie Kelley March 19, 2017

It’s March, and our hemophilia community in the US is celebrating Hemophilia Awareness Month. We celebrate advances in medicine, especially how far we have come in treatment, from whole blood to plasma to factor concentrates, and now viral-free and plentiful.

But that’s only in the US and similar developed countries. Up to 75% of the world’s population with hemophilia receives little or no treatment to stop bleeding. Compound that with extreme poverty and isolation, and there seems little to celebrate.

To support the goal of Hemophilia Awareness
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.

We hope these stories will touch your heart and encourage
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.

Meet Rathish from India

Rathish became a Save One Life beneficiary when
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
TV.

Rathish’s father is a day laborer, earning about
$50 per month. His older brother, Sudhish, who doesn’t have hemophilia, works
as a welder to supplement the family’s income.

When Save One Life’s India program coordinator,
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.

It took much courage and weeks of physiotherapy
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.

Meet
Inderjeet from India

This is a sad story, as Inderjeet, 15, passed
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.

The team decided to transport Inderjeet to
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.

Inderjeet was sponsored for more than six years.
In his most recent update to Save One Life, he was grateful to his sponsor and
expressed his love for her.

Monday’s child is fair of face,

Tuesday’s child is full of grace,

Wednesday’s child is full of woe,

Thursday’s child has far to go,

Friday’s child is loving and giving,

Saturday’s child works hard for a living,

But the child who is born on the Sabbath day

Is bonnie and blithe and good and gay.

—A. E. Bray’s Traditions of Devonshire (Volume II,
pp. 287–288), 1838

The Mountains are Calling…

Laurie Kelley January 16, 2017

The mountains are calling, and I must go. —John Muir

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.

Chris Bombardier

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,
Chris’s motivation

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.