Save One Life

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.

Fast and Furious!

Barry the Biker is at it again…. riding clear across America to raise money for and public awareness of hemophilia!

Barry Haarde is a 47-year-old with the stamina and ambition of a 20-year-old athlete and the soul of an ancient sage. He also has hemophilia and HIV, and lost a brother with hemophilia to AIDS. He conceived the idea to ride across America two years ago, and completed one trans-American trip last summer, covering over 3,600 miles in 7 weeks. You can read about that exciting journey in a previous blog.

Last year, Barry became the first person with hemophilia/HIV to complete a trans-American bike trip.

WFTW2013MapThis year, he does it again, but in only 30 days! Starting from Costa Mesa, California, Barry will ride an average of 110 miles a day,  through the southwest and plains, to arrive after 3,456 miles in Amesbury, Massachusetts on May 23. This is also the day of our annual Spring Gala for Save One Life, the beneficiary of Barry’s fundraising. Barry plans to attend, as soon as he hops off his carbon-framed steed.

Each day of his trip, as he did last year, Barry devotes to someone with hemophilia who died of HIV. He posts daily on Facebook. If you are friends with Barry on Facebook, you will be reminded of each beautiful man who died. What a tribute! Does anyone anymore put this kind of thoughtfulness into action?

Last year Barry raised about $50,000 for Save One Life, the child sponsorship program for children with hemophilia in developing countries that I founded. This year he hopes to raise $35,000. Please consider sponsoring Barry in any amount. Thanks to Baxter Healthcare, our Gold sponsor!

Great Book I Just Read

Freddie Mercury: The Definitive Biography  by Lesley-Ann Jones
I’m on a Queen kick since I witnesses the amazing performance of Gary Mullen and the Works as the Queen tribute band a few weeks ago. I always liked Queen but now love them and appreciate them even more. This is an in-depth look at one of Rock’s most intriguing and talented front men, Freddie Mercury, who is often cited as the greatest vocalist in Rock history. Certainly no one could match his range. This book is a great first look into his life, from a childhood on Zanzibar (I actually saw the house there he grew up in) to his life at boarding school, the roots of his neediness for praise and adoration, the strange duality of his nature–and not just his bisexuality. He was complex, talented and self-destructive. And a showman all the way. His personal charisma, charm and intelligence are clear. This is also about Queen, probably one of the most educated of all Rock bands. Life on the road, Freddie’s affect on the band, how they grew in influence and hit the heights. Those of you who watched Live Aid will recall how Queen stole the show. Their live music far surpasses their recorded. Freddie adored opera and even produced “Barcelona,” an album with his favorite opera diva. You’ll learn about the history of the band, and Freddie’s sad demise to AIDS in 1991. Great read. Four/five stars (but then I am biased)

Eye on the Summit!

 
A very special week in Hemophilia Adventure History! On Tuesday, Chris Bombardier, a 27-year-old Colorado man with severe factor IX deficiency, sets out to climb Aconcagua, a 22, 847 foot mountain located in northern Argentina, near the border of Chile. It is the highest mountain in the Americas, and is part of Chris’s unprecedented Seven Summits
climb. Unprecedented because no one with hemophilia has bagged all seven
summits—the highest mountains on each of seven continents.
 
Why is Chris doing this? How dangerous is it?


“Obviously I hope to summit,” the Denver native told me in a recent telephone interview. “I also hope to raise greater awareness of hemophilia globally. Most
people in the States don’t even know about hemophilia; think about how little is known worldwide. I think having someone with hemophilia pushing the limits
is a cool story in itself, but I hope it raises awareness of the discrepancy in treatment.”

Chris knows something about that. He sits on the board of the nonprofit I founded, Save One Life, which is dedicated to assisting individuals in
poverty with hemophilia in developing countries. He also has helped establish a blood testing lab in Eldoret, Kenya.
 
“Physically, I feel good, strong,” says Chris, an avid mountaineer and adventurer. Chris already has knocked off one summit: Kilimanjaro
in Tanzania, when he climbed in April 2011, becoming the first American with hemophilia to summit it. He is using a long lasting factor in experimental
studies currently, which, he says, is working well. He plans to infuse on the mountain as needed.
 
 
Chris will be climbing with two guides and eight other climbers. Chris’s climb is being funded by LA Kelley Communications.
 
“We start the climb on Tuesday, January 29th with a hopeful summit day around February 7th or 8th, says Chris. “I posted a thorough itinerary of the climb on my new website and blog.” Chris also hopes that he inspires people to donate to Save One Life; while his climbing costs are covered, every penny he raises goes to helping run Save One Life, which serves over 1,000 people with hemophilia who live on about $1 a day.
 
While in Argentina, Chris also hopes to meet the Hemophilia Foundation of Argentina, one of the world’s first hemophilia nonprofits and one of the best run. Carlos Safadi, a lawyer with hemophilia who sits on its board, also serves on the executive committee of the World Federation of Hemophilia. Carlos writes, “It will be my pleasure to welcome Chris to the Foundation.”
 
Check out www.adventuresofahemophiliac.com  to read more about Chris and his momentous climb! And show your support by making a donation in any amount to Save One Life!  www.saveonelife.net
 
 
Great Book I Just Read
Buried in the Sky: The Extraordinary Story of the
Sherpa Climbers on K2’s Deadliest Day
[Kindle]
 
The worst accident in the
history of climbing K2, the second highest mountain in the world but known as
the most treacherous, happened on August 1, 2008, when 11 mountaineers from
international expeditions died. What sets this true story apart from other
mountain climbing stories is that it is told primarily from the sherpas’
point-of-view. The authors get inside the mind-sets of the sherpas who brought
the many clients up the mountain that day; their lives from childhood are
replayed, revealing their sterling character, and how most escaped dire poverty
to become rock-stars of the climbing world. But the “goddess” of the mountain
had other plans for the unlucky climbers: reaching the summit too late in the
day, the return became a race against the dark, the cold when disaster struck.
An avalanche buries the lead ropes, scattering the climbers, leaving some suspended
upside-down all night long, others to walk over the edge, and still others to abandon
their fellow climbers. It’s a tragic tale, masterfully told with great
compassion and in-depth focus on each individual. Most fascinating to me were
the many references to the Nepalese sherpas’ faith in the goddess of the mountain,
and the Pakistani guides’ Islamic faith and how their faiths led them to assist
the many climbers and other guides in trouble, putting their own lives at
terrible risk.  This story of
heroism and yes, hubris, was a page-turner, and I finished it in two nights.
Four/five stars.
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