Save One Life

Summit 4: Heart of a Lion

Chris Bombardier has a soft-spoken demeanor, but has the heart of a lion. He just bagged his fourth summit, in his attempt to be the first person with hemophilia to conquer the Seven Summits—the highest summits on each continent.It was a tough, grueling climb, the hardest one he has done to date, he confided, and that’s saying a lot.  But the outcome was worth it!

Three more to go, the last being the breathtaking Mt. Everest. Congratulations, Chris!

Chris’s climbs benefit Save One Life, the nonprofit I founded to help children with hemophilia in developing countries. So he not only climbs for personal challenge, but to advance hemophilia care for those who have none. Heart of a Lion!

Please read this excerpt from his blog, and visit “Adventures of a Hemophiliac” to read the rest of the story, and about his upcoming climbs! (Thanks SO much to ASD Healthcare, Reliance Factor of America and BDI Pharma for supporting Chris’s climb!) Visit www.SaveOneLife.net to learn more.

Denali/Mt. McKinley Part 2: Lower Glacier to 14,000ft

Submitted by Chris Bombardier on Thu, 2014-07-31 09:09This year, Denali lived up to the hype of brutal weather.   Summit rates plummeted from the typical 50% to the low 30% when we   arrived in Talkeetna, and having a HUGE snow day so early into the trip   made us all a bit concerned. After our snowshoe fun we discussed our   plan of action. Our amazing guide Melis decided we needed to wait for   the snow to settle before heading up the mountain. Not only would this   lessen the danger of avalanches, but also make travel over the feet of   new snow easier. Another group had different plans and wanted to move as   soon as the snow stopped and the clouds cleared. We saw them struggle   past our camp and begin the ascent of Ski Hill. Hours later they were   still in sight. It took them 6 hours to reach a point that only took us 2   hours a few days before. I was so glad our guide made the decision to   leave bright and early the next morning.

We woke up at 3 A.M. the following day and the weather looked great. We packed up camp, organized all our gear, and headed out. Luckily, the team that left the night before broke trail up Ski Hill and we moved quite easily. We found the other group camped not far from where we last saw them. They must’ve been exhausted and had to camp there. Another AMS team left a few hours before us so the trail was also broken most of the way. About 3/4 of the way to 11,000 camp we passed the other AMS team descending back to Camp 1. They cached their gear and were heading back for the night. From there on out it looked like we would be breaking trail. Melis lead to the cache and when we arrived we decided to pick up ALL of our gear and head up the final hill. I was feeling good until this point. Then things changed quickly.

From the cache we only had a few hundred feet of untracked snow to make it to the rest of the trail. These few hundred feet were the worst of the entire trip. I was second on the rope team following our guide Mike. He charged into the fresh snow and was moving quickly. I was trying to step opposite of him so that the snow would be packed down evenly for the others. It was brutal! We were sinking knee deep in snow on snowshoes! I think I would’ve been able to handle it but the pace was too fast for me. Instead of asking Mike to slow down I tried to tough it out. I failed. By the time I said something my legs were dead and we still had the entire hill left. The next 2 hours were brutal. I asked for more breaks and my legs finally came back. We made it to camp and I hoped that was the worst day I would have on the mountain. I knew from then on I would be more vocal about how I was feeling. There is no shame in asking for a break or slowing down the pace a bit.

We had a much needed rest day after our move to 11,000ft camp, at least much needed for me. It was an infusion day and I really wanted to do it outside with the amazing views around. Unfortunately, the weather didn’t cooperate and I was restricted to my tent. The infusion went well and I was ready to roll for our next trip up the mountain. If you want to see the video of my tent infusion check out my Facebook page.

With my body restored I was ready to tackle our next goal, caching gear near Windy Corner on the trail towards 14,000ft camp. We ditched the sleds for this part of the climb which was amazing! I would much rather have a heavier backpack than pull a sled. At this point of the trip we really started climbing the mountain and weren’t just making the approach. Distances between the camps weren’t as great but the elevation gain was pretty much the same. Our first obstacle was Motorcycle Hill. This is where I really felt like I was climbing a mountain. The terrain started getting steep and strangely I started to feel stronger. We knocked out Motorcycle Hill quite nicely and turned up Squirrel Hill. As we were climbing Squirrel Hill our guide informed us of the massive cliff just out of site. That definitely heightened my senses and made me focus even more on every step. A massive avalanche slid over a cliff on the other side of the valley. I have never been so close to a slide and you could really feel the power of it. It was a great reminder that the mountain is always in control.

The weather kept improving throughout the day and when we cached we had an amazing view. It’s always an amazing feeling being on a mountain above the clouds. After we buried our cache we headed down. As we descended Squirrel and Motorcycle Hill I was in the lead of our group. The view was absolutely breathtaking and up to that point, it was my favorite day on a mountain. I felt strong again and confident that this was going to be a great trip. That night we got word that another storm may roll in. We built up wind walls around our tents and prepared to be there for awhile.

The wind picked up overnight and some snow fell but it wasn’t as bad as we thought, but still not great to move in. Melis thought we were going to be stuck for the day until the clouds suddenly started to break. Our guide made a few satellite phone calls to make sure this break would last and decided we needed to pack up and go for it. We took down the tents in the late morning and were on our way to 14,000ft camp just after noon. The trail was harder due to the new snow but we still made great progress. As we reached the top of Squirrel Hill the wind started to pick up and we knew we needed to get around Windy Corner as quickly as possible. Lets just say I get why they call it Windy Corner. We didn’t pick up the rest of our cache this time but we did stop and grab our helmets off the top as we passed the corner. The wind was howling. I grabbed my helmet, continued walking, and then waited for my teammate behind me to put his helmet on. It seemed like it was taking forever. As I glanced back to see what was going on, a freezing gust of wind and blowing snow slammed against my face. I could barely make out my teammate and just turned my back to the wind. The next 10-15 minutes of climbing around Windy Corner were brutal. Then as we crossed onto the 14,000ft side of the corner, the mountain turned peaceful. It was an amazing transformation. We continued on to camp which was still a few hours away. We pulled in around midnight, set up camp, cooked some food, and crashed hard. Another tough, tough day on the mountain. We were now in a fantastic position to get up the mountain and I really felt great at this point.

Risks and Rewards

I love taking risks. Getting that adrenaline going; seeing how far I can push myself. There’s a great quote and I don’t know who said it: We don’t know who we are until we see what we can do. From going to graduate school on my own, to skydiving, to cooking (seriously), I love taking risks.

Today I went bungee jumping for the first time ever, in Queenstown, New Zealand, following the WFH Congress in Australia, because I’ve already done the skydiving thing many times, and then there was that gorilla in Rwanda last month…

So 439 feet over a canyon I leaped into the air, executing a perfect swan dive into nothingness, and enjoyed the air pushing against my face, roaring in my ears, the earth rushing up to greet me… then boing! I am gently pulled back from the earth and tossed upward, the way a seal might toss up a fish to swallow; down again slower, then back up again, hanging upside down. I yank a cord attached to my feet and instantly I am upright, and the guys switch on the wench that will haul me up to the platform.

I loved that first jump so much, I did another one right afterward. The guys on the platform loved that. Everyone else had left. Risk? Some, I guess. Reward? Bragging rights, and a massive, pulsating adrenaline rush that you can’t get too many places on earth.

Well, I’m not the only one in the community who loves risk. Barry Haarde  just finished on Saturday his third coast to coast ride, on a bike, racking up about one hundred miles a day. A day. A day! I did 100+ miles on a bike last September in one day and it just about killed me. Despite having hemophilia, HIV and a knee contracture, Barry is a human machine. I can’t imagine what his physicians must think of him. He must shame them; you can’t get fitter than he is, I suspect.

Barry Haarde: Legend, risk taker, reward giver!

There are lots of risks for Barry on the ride: physical problems like bleeds, injuries, illness. Logistical ones like accidents, bike problems. And psychological: what if he didn’t finish? Oh, the humiliation! But he did finish. He always finishes.

His reward? He goes down in history. He’s a celebrity. He’s a cool, righteous dude. He’s a role model for thousands of young people with hemophilia and a few older ones who have hemophilia and/or joint damage. Heck, he’s my role model. Dreams can come true. You’re never too old. Never quit. Think of all the cliches… they’re true!

And Barry posted on Facebook each day, as on previous rides, photos of those who died from contaminated blood, injected through their clotting factor. Intangible rewards: people who will never be forgotten, thanks to Barry. This included his own brother John.

And… tangible rewards for hundreds who will never know Barry, and never even know what he did. Barry raised over $45,000 for Save One Life (http://www.saveonelife.net), the nonprofit I founded to help kids with hemophilia in developing countries. For these kids, each day is a risk. They may not make it to the next without clotting factor. We’re here to help them get through childhood, because each child matters.

Barry writes on Facebook:

“Wheels for the World III” is now complete and our fundraising goal was met! We wish to thank all those who made our ride a success, who include (but are not limited to) our corporate sponsors, Baxter, Bayer, Alliance and Matrix Pharmacies, King BioMed, Colburn-Keenan, our many grass roots donors, America By Bicycle’s fabulous staff, my managers at HP for arranging the time off to complete the ride, and especially, Ken Baxter, for the countless hours spent on photo/video editing, phoning media outlets, and travelling all the way down to L.A. to document my departure. Thank you all and see you next year!!

Next year? Oh my gosh, that means he’s going to do it again! I also need to find a risky venture. Bungee jumping was a 30 second adventure while Barry’s was one month! Maybe I will ride with Barry. That would be the greatest reward.

Thank you, Barry! From the bottom of my heart, which at one point was deep in a canyon today.

http://www.prweb.com/releases/2014/05/prweb11818820.htm
http://www.wsav.com/story/25539876/physical-challenges-dont-stop-man-from-incredible-bike-trip

Speak Out, Create Change!

Kenyatta National HospitalIt’s
about time. 
As World Hemophilia Day was celebrated in many countries, I chose to spend this year’s WHD in Kenya, a country I have been visiting since 1999. The nonprofit I founded, Save One Life, has three programs here—microgrants, scholarships and sponsorships—each touching directly the lives of many children and young men
with hemophilia.
The day was organized by the eloquent Dr. Kibet Shikuku, a hematologist at the Kenyatta National Hospital in Nairobi, and James Kago, a young man with hemophilia. Dr. Kibet welcomed about 70 family members—parents and children with hemophilia or von Willebrand disease. The day provided an overview of hemophilia for the press members present, the needs of
Kenya, and words of wisdom for moving forward from this day.

“My prayer today,” Dr. Kibet invoked,  “is that we walk forward as a group, so we can advance the issues that affect us. We are one body with different endowed parts. We want to be worthy partners for better hemophilia care in Kenya.”

One main goal is to ensure better diagnosis, he added. With a population of 43 million, Kenya should have roughly 3,000- 4,000 with hemophilia. About 400 patients were identified at one point (meaning they came in at one time in their lives for treatment), but the numbers are not reliable. Only about 50 patients are regular visitors to the treatment center.

Other take aways from Dr. Kibet: “We Kenyans we have every right to be provided for by things that affect us with hemophilia. We must take charge of our own destiny. Togetherness will make us strong. Speak with one voice! We must lobby the government to support testing and availability of factor. Time to speak out and speak up about hemophilia: our community, our accomplishments, our needs.

Speak Out, Create Change was the slogan for World Hemophilia Day, the April 17 event that commemorates the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who envisioned our global community working together to improve care.

Speak out… for kids like Emmanuel

Kibet thanked the WFH and Project SHARE for their support of donated factor. He also
thanked donors in US, especially those who support Eldoret project, like the
Indiana hemophilia treatment center and Novo Nordisk Haemophilia Foundation.

He also thanked the Jose Memorial Haemophilia Society and showed a photo of a man
who was in bed for four days with a severe bleed. The JMHS provided him with a donation
of factor.
He noted that there is simply not enough factor; once Kenya secures enough
regularly, then it can offer home therapy.

This is a huge point. Kenya is large, and roads can be difficult. Most patients
living in rural villages have no way to get to the treatment center in Nairobi,
the capital, or can afford transportation. I know first-hand as I have
traversed these roads quite a few times. Imagine taking a public bus, crowded,
hot, hours long, with a painful psoas bleed or worse.

Emmanuel

James Kago

The audience really responded to this idea and asked about home therapy… hoping that someday, someday speaking out… will create change.

Kenya has come a long way, and I was very excited to see at this meeting more change is afoot, all for the best, to create the kind of unity and one voice Dr. Kibet mentioned.
The informative meeting was concluded and a delicious lunch served outside on the hospital grounds. I was able to hang out with a few of the boys I’ve known for years and years: Jovan, Peter, Charles (who has a baby now!), Emmanuel, John.
Lucy Kago asks a question
Mrs. Mwangi and Stephen
Moline Odwar and Laurie Kelley
John with Laurie Kelley
Simon, Laurie Kelley, Peter
Laurie Kelley with Lucy and son Simon
Peter, Maureen Miruka, Jovan Odwar

Calcutta: Scholars Amid the Squalor

Monday, November 11, 2013 Kolkata

Sheets being cleaned

Have you seen the movie “The Life of Pi”? A phenomenal achievement in cinematography that happen also to be a stunning story about life. It starts off with a boy named Pi from Pondicherry, where I am now. I’ve been in India for almost two weeks, hitting six cities, visiting treatment centers and most of all, visiting some of the families and patients enrolled in Save One Life, which numbers about 600 in India! I’ll get to Pondicherry next week—first, I want to fill in what’s happened since Mumbai.

Rickshaw

In last week’s blog, I detailed the hemophilia camp (Camp HemoSOL) in Mumbai. After camp, Usha Parthasarathy, of Chennai, a mother of an adult some with hemophilia, and former VP Development of Hemophilia Federation (India), the national organization, and one of the founders of the Chennai chapter, and I flew to Kolkata (Calcutta), on the east coast, arriving late Sunday night. We awoke Monday morning, November 11, to the Muslim muezzins calling the faithful at 5 am on loudspeakers, and then hearing the rhythmic thwunk, thwunk of bed sheets and towels being slapped across rocks by workers at the massive green pool that stretches below our hotel window. The sheets are hung to dry like stiff, grey banners. I’m not sure what beating them against rocks does. My sheets and towels still don’t look too bright or white.

Admitted for an infusion

Our morning and early afternoon was spent at the new treatment center, a gift from a wealthy patron. It’s stunningly clean, an anomaly in Kolkata, a city besieged with people, cars, and mountains of trash; we meet with many patients. One is a teen with a bandage on his head; his expression is a bit wary. I later learn he is the same boy, age 6, I met back in 2001 when I first visited. He was then an orphan, and the center was raising him. He lived there! Now he is with relatives and looks good. Another boy, sweet faced and gentle, with his mother.

Another, a jolly-faced, round boy, who had been sleeping but they woke him. He smiled deliriously while we snapped photos. Finally another teen whose home I had visited in 2005; I never forget these faces and I’m amazed that he’s here on the one day I visit eight years later.

Laurie Kelley with hemophilia patient

We asked questions about their treatment (mostly cryo and plasma!), passed out toothbrushes we were given by the families of North Carolina (and the Hemophilia Foundation of North Carolina’s Christmas party last year) and puzzles. We met with an older man, 64, with a psoas or hip bleed. He was there with his 16-year-old son who spoke English. The Indian patients are all so nice, patient, polite. Unfailingly polite. Eventually we get to the Save One Life scholarship recipients. These are young men who qualify for a grant of money to help defray the cost of college.

Usha examines a boy with a bleed
Laurie with a new Facebook friend, Ayan!

One boy, Sajid, really caught our eye. His parents have died, and he was short money for the education. He qualified for a scholarship from us, but was still $40 short for tuition. That’s a lot of money in a city like Kolkata. At age 21, he raised his own money by tutoring other students. And he was living on his own. We replaced that money that same day, telling him how proud we were of him; Usha had tears in her eyes hearing his story. This experience made me realize what a difference we were making in these boys lives.

Save One Life’s Kolkata Scholarship Recipients

After the visits with the boys, we took photos; the boys all seemed genuinely happy to see me, and hung around a while to snap photos. I figured they might be dying to get going home. Then Usha and I, along with members of the Kolkata Hemophilia Society, including Ravi Ojha and his son Siddhartha, drove to a restaurant, and had a late lunch. I am not eating much on this trip and my wristwatch now keeps sliding about my wrist as I lose weight. (My girlfriends all want to come with me on a trip when they see how I always lose weight!) The food was very good: roti, chepati, and my favorite— masala tea. After this, we went to visit a beneficiary in his home. Ashish is sponsored by BioRx’s president, Eric Hill, one of many he sponsors with us.

 

Kolkata has many homeless people who live on the streets

It was not a long car ride, but we shoulder our way through the clogged city streets, and went to the poorer section of Kolkata, though almost all of it seems so poor. Still, this is a fascinating city. Yellow cabs dash about madly alongside ancient rickshaws pulled by white-haired, iron-muscled old men. Lights are string up deliriously here, celebrating the festival of lights, Diwali. So it was nice to drive about at night, breathing in air that was at once cool but gritty, fringed by multi-colored lights, guided by flickering lamps lit at passing Hindu temples, and finally arriving at an alley where Ashish lives. He was waiting at the beginning of the alley, where sweet shop sat, guarded by a generic third-world yellow dog, complete with the mandatory curly tail, eating some crackers.

 

We were happy to see Ashish, and set off in the dark down the alley, a short walk to his house, with him leading the way. House is misleading; it’s only a 12 by 12 room, big enough for one king size mattress and one cabinet—that’s it. The family sleeps on the bed and on the cold and moist concrete floor. Ashish is adorable, with such personality and expressive face. He wrote a letter to Eric, in English! Then cut a little video for me. I loved this kid at once. His family was sweet and slightly embarrassed to have foreign visitors. The father was not present, but the mother was, and didn’t quite know what to do with herself. The children had no such problem; they giggled, mugged for my camera, and wriggled on the bed in excitement.

Asish, a Save One Life beneficiary

After a long day with too little sleep, I often feel like I want to skip the family visits, which invariably happen during the mosquito-driven night, in grimy places and dark environs. But I never regret going. It means the world to them—a visit from an American lady! And I brought stuffed animals which made them happy. We spilled out into the dark alley after the visit, and headed back to the car, with many waves and good byes.

Back at our hotel, Usha and I skipped dinner, once again, and snacked on the raw almonds I brought from Boston. I compile notes, process photos and turn in. Tomorrow we head for Durgapur, named after the goddess Durga, who brings success and wealth. Maybe for a lucky few; our hemophilia families do not know such luck, unless it’s knowing they have a hemophilia
chapter, some donated factor, and Save One Life. (Next week: Durgapur,
Bhubaneswar and Pondicherry)

Diwali lights

 

Siddhartha of the Kolkata Chapter with Ashish’s family

 

Laurie and Usha with Ashish in his “house”: the right and left walls are visible. The room is only 12×12 and houses six people

Celebrating Heroes Among Us

Laurie Kelley opens gala

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

Neil Herson receives recognition from Martha Hopewell

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

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

Usha accepts award

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

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


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

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

Laurie with local patients Justin Levesque and Mark Zatyrka of AHF

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

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

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

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

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