Save One Life

Wild Child

Remember the 2014 movie “Wild”? About a woman, self-named “Cheryl Strayed” (as in strayed from the path), who decided to hike the Pacific Crest Trail from California to Oregon, a journey of 1,100 miles. Recently divorced, her life in emotional tatters, the trip is supposed to help her figure out who she is and where she is going in life. With no hiking experience at all, the journey is filled with danger and discovery. The movie received positive critical reviews.

Free Will: William Addison

I was reminded of the movie this weekend after driving to Connecticut, to a trailhead on the Appalachian Trail (AT), to catch up with a young man with hemophilia who is now undergoing his own “Wild.” Will Addison is hiking 2,200 miles, southbound (“SOBO”) from Maine to Georgia, to raise money for the nonprofit I founded, Save One Life. That in itself is astounding. But consider this: he is not even 20, and is traveling solo.

Doug and I arrived at the trailhead around 5:30 pm, and immediately saw members of our local community, there to cheer Will on. Then Will’s parents arrived, David Addison and Victoria Kuhn, and their daughter Grace, Will’s twin sister, all from Maine. These are true outdoors people, who love camping and adventure. They came fully prepared to restock Will with food and supplies.

For Will, this was day 44, and mile 718. We parked by the side of the road, waiting for Will to appear.  There were freshly baked chocolate chip cookies from Victoria, beer, and lots of laughs. Some of us came equipped to camp overnight with the Addison family, and to see Will off in the morning. We learned from Victoria that Will would not arrive till about 9 pm, or later, so we decided to hike the 1.5 miles on the AT ourselves to find the camp site, and to set up camp. It was a lovely hike in the 90° heat, shady and moist. My biggest fear was the plethora of Virginia Creeper everywhere lining the trail. I am highly allergic to this plant: even a brush of it against my skin will leave a rash like a second degree burn for two straight weeks. And I was wearing shorts!

Bleeding disorder community waits for Will

Once at camp, we quickly set up tents, spread out our sleeping gear, and then hiked back again to wait for Will.

Around 9:30 pm, as we milled about, watching the magical and mesmerizing green flashing lights from the multitude of fireflies deep in the woods, out of the forest, out of nowhere, came Will! He literally burst into our little latern-lit gathering at the edge of the woods as if it was just a little stroll; in fact, he had just completed his longest day, at 28.5 miles. Just imagine… while carrying a pack weighing about 30 lbs.

He looked great. He is tall—6 feet 1 inch—with blond hair growing longer by the day, serene brown eyes, and lanky legs. He immediately sat down and began eating! We had a lovely visit with him and the community members, who peppered him with questions about his trip so far. Victoria, ever resourceful, brought a Save One Life sign, and we took a group photo. And we all signed his banner, which he is bringing with him to Georgia, the way Chris Bombardier did when he accomplished each of the Seven Summits. This sounds like a trite thing, but when you are limited it what you can carry, and you are traveling for 105 days solo, every ounce matters. It’s a huge display of respect and commitment for Will to carry the banner.

Hiking to camp

We had cheesecake in honor of a milestone birthday for the twins, just two days before!

By 10 pm we had to call it a day. The visitors drove off, and the final team hiked to camp: Victoria and David, daughter Grace and son Will, Doug and I, and Paul, father of a son with VWD. Now it was dark, with fireflies twinkling like little green stars above, so we used our headlamps to light the way on the trail.

Once at camp, we stuffed our food into a bear box, then quickly got to sleep in our sleeping bags on the ground in the woods, serenaded by the hooting of a barred owl that eventually flew off in search of prey.

Morning came fast, as birds lit up the woods in chorus at 5:30 am. By 7 am we had packed everything and readied for breakfast. Will showed me how to use my “Pocket Rocket,” a gas-powered cooking device. As I am a danger in a normal kitchen with a gas stove, this 5-inch device that looked like a little bomb scared me to death. But Will was a good teacher: I boiled water for tea successfully.

Laurie Kelley and Will Addison: sharing a love of hiking and contribution

This was a great time to ask Will about his journey so far. He is young, only a teen, but mature beyond his years. Still, where and how did he get this idea and ability? He is an athlete, participating in track at school, and soon to start cross-country track. He is a Boy Scout, “Third generation!” Victoria proudly added, a program which no doubt has provided him with the training and skills needed to camp out for 105 nights straight, and get him all the way to Georgia. He infuses often, every other day, to ward off bleeds. He has zero body fat (and lost about 10 pounds on the trail so far) but has muscle tone, so he is in excellent shape. He has an outdoor-oriented family, so the woods are not new to him. He seems to thrive in them like a true wild child!

He’s raising money and awareness for Save One Life, our international child-sponsorship organization. Why Save One Life? He wanted to make a difference in the world, beyond the borders of Maine, his home state. I sense he wants adventure in the great, wide world too. Perhaps one day Will and I will climb Kilimanjaro together, and he can also see our families in Kenya and Tanzania, how they struggle and how much they need our help. His eyes lit up at this idea.

Breakfast in the wild

Will spends most days alone on the trail, quiet, thinking, listening to music through his iPod. It can be lonely. He is only a kid, really. How does he keep it together? My most important question was this: what have you learned about yourself these past 45 days?

He thought for a moment, while munching on a baguette. “I think I’ve learned that I am more independent than I thought I was.”

Powerful statement. As parents of children with hemophilia, we want our children to be independent. This might be an extreme example, but a teen who can hike an average of a marathon each day for 105 days solo, while needing to infuse every other day, is beyond impressive. It’s stunning. He needs abilities like discipline, goal setting, planning (“He planned everything himself,” Victoria adds), preparation, focus. Independent? More than most adults I know. This young man, William Addison: watch for him. Donate to his hike’s cause, Save One Life (he wants to reach $10,000!). Follow him on Facebook. Learn some things from his amazing journey. He’ll be hiking till September.

William Addison is the type of young person we want to see more of in the world–with or without hemophilia. He is the future… I hope, with all my heart.

Wild child, full of grace, savior of the human race…. “Wild Child,” The Doors, 1969

Climbing for Chris!

Chris Bombardier…. have you heard of him? He’s only the first person in history with hemophilia to have summited Mt. Everest (and the entire Seven Summits) and this is the third anniversary of his historic climb. Incredibly risky, incredibly rewarding. And he is now executive director of the nonprofit I founded, Save One Life.

Chris at the summit of Mt. Everest!

Chris has dedicated his life to helping those with bleeding disorders in developing countries. He even put his life on the line, to raise money and bring awareness of the plight of those with lack of access to factor.

Now all he is asking is for us to climb! Not Mt. Everest, but your stairs, in your home. Climb your stairs 29 times, to represent Everest (29,029 feet), donate $29 to Save One Life, and challenge 9 of your friends! So we are climbing for Chris (to honor his climb) but really climbing for the kids who suffer.

So today I did it! 38 steps, 29 times. After after I did that, I did it about two more times. And I’m going to keep doing it this whole month of May. How about you? Enjoy this 2-minute video to “Holiday” by Green Day, get motivated, and climb! I don’t know about you, but being in quarantine has not helped my waistline. I’m used to being super active. This will help! Learn more at www.saveonelife.net!

Bombardier Blood in Utah!

When our team was dividing up who will represent Save One Life at various showings of “Bombardier Blood,” the incredible movie about Chris Bombardier’s Seven Summits Quest, I jumped at going to Utah. Utah is one of my favorite places: drenched in southwest colors of red and yellow, with soaring mesas and fins, and deep, rich canyons, it’s an adventurer’s dream. It seemed to fit the message of the movie, too: go out. See the world. Climb, hike, walk, smell fresh air, dream, do.

After spending a week exploring Antelope Island, Moab and Zion, I headed north on I-15 and reached Salt Lake City. The Utah Hemophilia Foundation’s executive director Scott Muir was there to greet me. And not only greet me, but to give me the gift of his paintings, bound as photos in a hardcover book! All the paintings are of Zion National Park, which he well knows I adore. Scott is a talented photographer and artist.

And apparently, executive director! We had a huge turnout for the event. About 150 or more families arrived to socialize, have dinner, enter raffles and engage with the various pharma and specialty pharmacy vendors. I was so happy to meet up with long time friends, colleagues and Facebook friends (some of whom I have not yet met in person). There were so many children, and while you might think their presence might disrupt a movie, the children were as good as gold.

I gave a few words before the movie started, and let the audience know this amazing stat: out of the 108 billion people who have ever walked this earth, less than 500 have ever accomplished all Seven Summits. I’m not sure you can easily even measure that! The audience was hushed as the movie began, and for 90 minutes, were riveted to the screens.

Laurie Kelley and Scott Muir

After the movie, one 14-year-old asked me a very leading question: how did Chris keep his factor warm on the mountain? “Why don’t you ask him yourself?” I replied. His eyes lit up! Chris must seem like a hero to so many, and thus, out of reach. But he is very approachable. The young teen was thrilled to get Chris’s email address, and I had to ask him: was he interested one day in doing mountain climbs? He nodded his head vigorously and smiled! Come join us, I invited him!

And coincidentally, Save One Life will be hosting a three-day hike to the bottom of the Grand Canyon in 2020!

Bombardier Blood is about making dreams come true, and if you can see it at your local chapter, please do! You may believe anything is possible.

Thanks to Utah Hemophilia Foundation for hosting this movie, and to all who sponsored the event. Special call out to Octapharma, which sponsored Chris’s last two and most expensive climbs, and for daring to take a risk on a young man with a big dream. Sometimes the riskiest adventures yield the greatest joys and successes!

Bombardier Blood was created by Believe Ltd, and is now produced by Alex Borstein. It showcases not only Chris’s climbs but also the disparity of treatment in bleeding disorder between developed and developing countries, being addressed through the work of Save One Life.

Origins: Save One Life

The air was crisp with the coming of Fall when we visited New York City this past Thursday night to attend NHF’s Annual Soirée, a fundraiser that honors various members and organizations in the bleeding disorder community. I have attended once before, a few years ago. It’s a lovely night and chance to get caught up with colleagues and friends, while being dressed to the nines. This night, the nonprofit organization I founded, Save One Life, was to be honored. We were receiving the “Global Impact Award.”

Chris Bombardier giving acceptance speech

Along with Save One Life, Alex Borstein, television actress and community member, David Quinn, head coach for the NY Rangers and the World Federation of Hemophilia were also being honored for the Inspiration Award, Ambassador Award, and Global Leadership Award, respectively. Congratulations to all who were honored!

Chris Bombardier, Save One Life’s executive director (and famous mountaineer with hemophilia) and I took the stage to accept the award, while several of our board members looked on. With us were: board member Ujjwal Bhattarai, chair, who helped us found Save One Life, and his wife Sunita, who have a child with hemophilia; new board member Natalie Lynch, and husband Patrick (actor and film director, president of Believe Ltd., who has hemophilia), and board member Kayla Klein, mother of a child with hemophilia who works at Sigilon.

Val Bias, CEO NHF, Chris Bombardier and Laurie Kelley of Save One Life,
Dawn Rotellini, COO NHF

While looking at them from the stage and into the bright lights of the future, I recalled our very humble roots. I spoke to the audience about how Ujjwal and I have worked for 18 years to make Save One Life truly have impact among the world’s poor. It has been a long, difficult and challenging road, but with the greatest of rewards: to help those without access to factor have access; to help those who live on the edge have security; to let those with an uncertain future know they have an organization to count on. After 18 years we have now seen so many of our children in school, graduating, have jobs and even have families of their own.

We had to give credit to Chris, and his daring Seven Summits Quest, which helped raise awareness of Save One Life to the global community. And more than that, the documentary “Bombardier Blood,” directed by Patrick Lynch of Believe Ltd and now produced by Alex Borstein, has catapulted us into the spotlight. We never sought recognition or fame for the work we consider a personal and compelling mission—for me, based on my faith—but the movie has done more for us than just about anything we have done ourselves. We could not thank Chris or Patrick enough for their efforts. Their sacrifices and dedication have been huge. And kudos and gratitude to Octapharma, which funded the last two mega-climbs, and for funding the entire movie.

But absent that evening was a key person, perhaps without whom known of this would have come to pass.

Laurie Kelley with Lisa O’Connor, who created the idea
of Save One Life in 1999

Twenty years ago, a mom from Cold Springs Harbor, New York, not far from where the event took place, sent me a letter. She has a son with hemophilia, only a few years younger than mine, and read my books and newsletter. In 1999, we used to write letters to one another! Hers came on one sheet of yellow lined paper, and on it, she wondered if there was a way to help children with bleeding disorders in developing countries, like Save the Children. I happened to have sponsored two children with Save the Children, one in Lebanon and one in Mali. Not long after she sent her letter, I made my first trip to Pakistan, a country I have grown to love. There, on the Arabian Sea, in a humble, two room dwelling in a very poor area, I sat on a bed with a baby in my lap, listening to a father with a fretful expression speak about his two young sons with hemophilia. He was very poor, only earning about $20 US a month. He wished for an extra $20 a month, to send his oldest boy, Mohammad Ali, to school. With this education, his son could get a good job, once he learned English. I thought this would be an easy fix. And if we could do this for this Pakistani child, why not do it for others? Americans are among the most generous people on earth, and I knew if we appealed to them to help children with hemophilia who were poor and without factor, we could help change lives.

It was Lisa’s letter that kept drawing me back. Could we create a program like Save the Children?  The answer was yes. Yes. Anything is possible!

Now, 18 years later, here we are. Over 2,000 children sponsored. Over $3 million in direct aid. Over 270 college scholarships. Over 80 microenterprise grants. Over 30 camp grants. 13 developing countries. And more to come… .

(See www.saveonelife.net for a short video of Save One Life’s accomplishments so far)

Save One Life board members Ujjwal Bhattarai and Natalie Lynch, with spouses Sunita and Patrick

As it happened, I was going to Huntington, New York after the event to catch a Doors tribute band show at the Paramount Theater. Something rang a bell… I checked my database and saw that Lisa lived right near Huntington. A few texts later and we agreed to meet!

This morning Lisa walked into the Sweet Hollow Diner, and we sat together for breakfast, while I shared all the profound and life-changing programs and stories that have happened over the past 18 years.  She was amazed; with her son grown and gone, she had kind of lost touch with the bleeding disorder community.

I believe in honoring those who make a difference. Save One Life was not my idea; it was Lisa’s. Lisa cast a small stone into a pond, and the ripple effect continues after 18 years, and hopefully will continue for decades to come. Her idea was a catalyst, and so many have benefited from it. Let’s honor Lisa, as well as those Thursday night. It was her vision that gave birth to Save One Life.

Visit https://lakelley.smugmug.com/Events/Galas/NHF-2019-Soiree-Honoring-Save-One-Life/ to see photos of the event!

We need to give ourselves permission to act out our dreams and visions, not look for more sensations, more phenomena, but live our strongest dreams— even if it takes a lifetime. Vijali Hamilton

Recognizing “this great continent’s young people”

You may have heard that in March 2019, the $1 million prestigious Global Teacher Prize was given for the first time to a teacher from a low-income country–Kenya. Peter Tabachi teaches science and mathematics at a secondary school in a remote village in Kenya, and traveled to Dubai to be given his astounding prize by actor Hugh Jackman.

Street scene, Nairobi, near college

“This prize does not recognize me but recognizes this great continent’s young people. I am only here because of what my students have achieved. This prize gives them a chance. It tells the world that we can do anything.” —Peter Tabichi 

The majority of his school’s students are from poor families and almost a third are orphans. The school has one computer and there are 58 students per teacher. But Tabachi has achieved extraordinary things with his students, showing that it doesn’t take much to change lives.

And we at Save One Life believe that, too. During our recent visit to Kenya, we assessed our beneficiaries and we were most impressed with Javan Odwar, a young man now attending college, thanks to a scholarship from Save One Life.

I’ve known Javan since he was 9 years old; I’ve been to his home twice. It is a one room dwelling, for originally four children and parents. Javan is the youngest; since I last saw him, three years ago, his older brother James passed away. Javan and his sister Moline have von Willebrand disease. But nothing seems to stop them from achieving goals. And education is the ticket out of poverty.

With a new team of supporters, including Save One Life executive director Chris Bombardier, we traveled not to Javan’s home this time, but to his college, to see how he was doing. With us was Maureen Miruka, founder and president of the Jose Memorial Haemophilia Society, our program partner, and JMHS program coordinator Sarah Mumbi. Through the bustling streets of Nairobi we went on August 1, down some side streets, and finally at the college.

Now, when you think of college, you might think of ivy-covered New England brick buildings, or glass and brass city buildings, or maybe concrete block community colleges on the outskirts of towns. But not here. The Kasarani Catering College is a storefront on a dirt road. As you step inside, you enter a concrete-walled room, with chipped-paint décor, a banner, and a plastic table and chairs for ten. The stove was a hub of activity—clearly we were going to be fed lunch at 10 am! The students were busy preparing a feast.

Our excellent cooks!

Maureen filled us in: this was an example of the Kenyan government trying to expand education to those of lower economic means, by supporting middle-colleges. Rather than attempt four years, this trade “college” (essentially a one to two room storefront converted into an education center) would train young people to serve in the growing tourist sector as cooks and waiters. Or perhaps work as caters for weddings and other special events.

Javan couldn’t have been more proud. Impeccably dressed in black and white, he ushered us to our seats, and also entertained us by grabbing his acoustic guitar and singing for us songs he wrote! He has a lovely voice and is talented. One song was about having a bleeding disorder. Besides what will become his day job as a caterer, he hopes to make it as a recording artist as well.

The effort made by everyone was great. The young team of cooks prepared a feast of meat, rice and vegetables. I didn’t think I was hungry until I smelled and saw the food, and then I ate everything! While I ate, I noted the simplicity: on the wall were nails, on which the utensils would be hung; they were marked by simple, hand-written labels fastened with tape.

We are very proud of Javan. For me, knowing where he comes from, and seeing his ambition, and now having a scholarship from Save One Life and a college funded in part by the government, gives me security that this young man will make it. He will rise above poverty, as the next generation should, and become self-sufficient. He has big dreams. Our mission is to help him reach those.

Thanks to Patrick M. Schmidt of FFF Enterprises for his sponsorship of Javan through the years.

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