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.
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.
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
$50 per month. His older brother, Sudhish, who doesn’t have hemophilia, works
as a welder to supplement the family’s income.
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.
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.
Inderjeet from India
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.
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.
In his most recent update to Save One Life, he was grateful to his sponsor and
expressed his love for her.
—A. E. Bray’s Traditions of Devonshire (Volume II,
pp. 287–288), 1838
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
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)|
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.
You can follow him for the next three weeks on his blog: AdventuresOfAHemophiliac.com
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!
Hemophilia Awareness Month
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!