Wednesday’s Child*

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

March’s Child

I remember the Boston Globe column called “Sunday’s Child,” which profiled a beautiful child every Sunday in the Boston area in need of a foster home, in the hopes it would end in adoption. Let’s call this week’s blog post “March’s Child.” We have children with hemophilia in need of sponsorship!

It’s March, Hemophilia Awareness Month, and yet there are children in developing countries who lie at the fringe of our community, unaware that it’s “their” month, poor, suffering, waiting for help. We do our best to provide factor to these children through Project SHARE. But did you know you can sponsor one of these children through our sponsorship program Save One Life?

Helping us promote our cause is the amazing Chris Bombardier, who just spent 3 weeks in the wilderness, summiting Carstenz Pyramid in Indonesia. Yup, he flew all the way there, and suffered up that enormous mountain (the highest in Oceana–a stand-in for continent Australia) and #5 on his Seven Summits Quest) to raise awareness for hemophilia in March and for Save One Life in particular. How is that for sacrifice and dedication?

Most of us don’t need to go to such an extreme, though Chris so kindly asked me to accompany him (I would have if I didn’t have so much hemophilia-related work going on right now). We can just sponsor a child at only $22 a month. We are trying to get a mere 31 children sponsored in March, one for each day. We’ve almost reached our goal! Just FIVE more! We even have their photos below. Please consider helping us reach our goals to help give them a better life! It’s Hemophilia Awareness Month: Thanks to those who have pledged sponsorship! We hope more blog readers will rally to help these deserving children; what better month to make a pledge than March?

You can read more about Chris’s amazing climb here!

Laurie Kelley, founder,
Save One Life



Add caption


Great Book I Just Read
Eiger Dreams: Ventures of Men and Mountains by Jon Krakauer

From the mountain-climbing author of Into Thin Air comes nine gripping and informative stories about historic mountain climbs and the intriguing people who climb them. He covers K2, Denali, Everest and the Nordwand (Eiger) interspersing modern day adventurists and alpinists with history of climbing for each mountain. Krakaeur is a great storyteller: no nonsense but infusing his stories with awe, respect and love of the mountains. He also includes his own struggles with each mountain while portraying others’ climbs. Four/five stars.

Summiting to Save Lives!

Chris climbing Denali (Mt. McKinley)
March is Hemophilia Awareness month! But you already knew that.
What you might not know is that a brave young Denver man with hemophilia is making 
history!!
Chris Bombardier (don’t you just love that name? It’s like Jonny Quest or Tom Cruise—it simply implies adventure) is doing something no one with hemophilia has ever done before: summiting Carstensz Pyramid in Indonesia. 
Why this mountain? After all, the man lives in Denver, a mile-high city. (Yes, he has that to his advantage; lots of extra red blood cells to help with altitude). Carstensz Pyramid will be Chris’s 5th mountain in his goal is to become the first person with hemophilia to climb the highest peak on each continent, aka The Seven Summits.
Mt. Kilimanjaro in Africa. Mt. Elbrus in Russia. Mt. Aconcagua in South America, and Mt. McKinley in the US: been there, done that for Chris. 

This will be  his most technical climb yet–that means hard!  Carstensz Pyramid is the highest mountain in Oceania standing at 16,024 feet above sea level. The mountain is in a remote area of Papua, Indonesia and the climb will involve specialized skills such as rock climbing, rappelling, and a tyrolean traverse. Chris will end the climb with a 4-5 day trek through an isolated region of the Papua jungle.

Chris infusing on a mountain top!

And he asked me to come with him, mentioning there were a lot of leeches and snakes in those there “isolated regions.” I wanted to go, believe me. One day I will go with him (though we are now narrowed down to Antarctica and Mt. Everest. I have to remind him I am twice his age), if only to base camp.

Chris left Friday, March 6 and has just landed in Bali. He is psyched and raring to go! 

You can follow him for the next three weeks on his blog: AdventuresOfAHemophiliac.com

Quick background: The Seven Summits Quest began when Chris traveled to Kenya on a work-related trip. While there, he witnessed the difficulties of those living with hemophilia in less developed regions of the world and decided he wanted to do anything he could to help. Chris declares, “Of course I look forward to standing on the summits of these incredible mountains and feeling the accomplishment of doing it with hemophilia. I want to show young people with hemophilia what’s possible. Our world is an amazing place, and I don’t want people with hemophilia to think they have to live in a bubble. I want them to get out and experience life to the fullest!” But, more importantly, Chris is committed to spreading the word about hemophilia and raising people’s awareness of the huge disparity in care that exists in the world.

And I add proudly that Chris is a board member of Save One Life, the nonprofit I founded in 2001 to help support the world’s poor with hemophilia. We have about 1,400 children and young adults 

enrolled, who receive direct funding, scholarships, camp funding and microenterprise grants!

Deepak Das of India, whose leg was amputated
last year due to an untreated bleed

And in March, Chris is going to dedicate each day to a child in need. Our goal is to get 35 more sponsored. They are waiting on our website: http://www.saveonelife.net
Chris is taking risks at great expense to highlight the need of those in impoverished countries, where factor is limited or nonexistent. Please help support his climb by sponsoring a child today!
http://www.prweb.com/releases/2015/03/prweb12565783.htm

Hemophilia Awareness Month

In the US, this is Hemophilia Awareness Month, a chance for us to let others know who we are and what we need. Our community just did that last week on Capitol Hill, storming the hallowed halls and meeting with state representatives and senators when possible, to inform them about bleeding disorders and mostly about our funding needs.

I participated for the first time last year and loved it. An illness kept me away this year (all better now!) and how I missed it! I was so impressed with the event. It’s a chance for all of us, well known and not so well known, to share our stories. In fact, it’s most impressive when the average mom and dad, and even their children, meet with Washington folks to tell them about life with hemophilia.

Visit the NHF website (www.hemophilia.org) or HFA website (www.hemophiliafed.org) to learn more.

Speaking of HFA, what a fabulous website they have! And their annual meeting is coming up on March 27 in Tampa, Florida. While there are no scholarships left to support attending, if you can at all try to attend, please do. It’s a very different flavor than the NHF events. Both are great, but different.

What can you do for Hemophilia Awareness Month? First, learn more about the disorder yourself. It’s hard to have others appreciate what you endure if you don’t have a ready and coherent “script.” I was on Facebook most of the weekend contacting the many people who have reached our to me this past year, sorting out who is actually related to hemophilia, to keep them as friends. Some are first-time parents of a child with hemophilia and I am delighted to send them our educational materials.

Second, check in on our website (www.kelleycom.com), as well as NHF, HFA, PSI (www.youneedpsi.org) and your local hemophilia organization. Make it a habit every couple of weeks to check out a new website. There are so many!

Try to attend a hemophilia event. It might be the HFA one in March, the NHF one in Washington DC in September, or maybe a local one near you. Meet families, meet physicians, meet factor manufacturer reps. The bottom line is–get active and involved! We need you and the world needs to know about hemophilia. Help pave a great future for your child starting this month!


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