A Christmas Carol
Summiting to Save Lives!
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.
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
enrolled, who receive direct funding, scholarships, camp funding and microenterprise grants!
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
http://www.prweb.com/releases/2015/03/prweb12565783.htm
Meet You in St. Louie?
Great Book I Just Read
To Live is to Die: The Life and Death of Metallica’s Cliff Burton [Kindle]
LA Kelley Communications Origins: Part 2 PEN is born!
I thought my life’s work was complete at age 33 when my book Raising a
Child was published. It took eight solid months of grinding work, not
helped by the fact that there was no Internet, or decent word processing software
in 1990. I actually had one of the first Apple computers, with a whopping 128 MB
of memory!** And now I had a full-time job as an economist, a three year old
with hemophilia and a darling newborn daughter!
But life had other plans. A mom from North Carolina, Sybil, wrote to me (and I mean wrote, like a paper letter; no emails for us then!) a wish: wouldn’t it be nice if we could somehow keep the exchange of parental stories going? Like in the book, which included the quotes of 120 different families with hemophilia. It was the first time in history that families with hemophilia could read all about their disorder and share in the experiences of other families.
company that shipped my son’s factor, got a copy of my book. She like it so
much she called me and asked if Quantum could support some initiative of mine. Perhaps
another book? Of course, Quantum wanted to put its name and logo on such a book,
the way Armour Pharmaceutical did. And why not? These companies paid for the research, writing and publication. We then gave away the book. No royalties; no one profited. All the companies asked for
was to have their logos on the covers as an acknowledgement.
time.
a few hundred dollars to get sponsored. I only had 120 families on my mailing list, the ones who contributed to the book. I called my new venture The Parent Exchange Newsletter, because it would primarily be an exchange of parent and patient information, much like the groups on Facebook do now. My resources were limited. I cut and pasted paper submissions, and photocopied each newsletter and stapled them. I mailed them and “PEN” was born! Primitive but effective!
calling Raising a Child With Hemophilia their hemophilia “Bible” and my mailing list grew with each family that wrote to me. More shared their stories, watching to be heard.
or The Magic School Bus, there were no books for children on hemophilia. Understanding how children learn to read, and process their world at different age groups, a branch of psychology known as developmental psychology, I felt equipped to try to write a children’s book on hemophilia, to help children understand. Indeed, ideas just came to me as I lived with trying to teach my own son about his disorder in a way he can understand.
used to paint, so I was author and illustrator. I thought of a book or poems explaining hemophilia to preschoolers in a fun manner; a history book about Alexis, son of the last Russian tsar, a story which might have changed history forever. Remember I was reading Peter the Great while in labor with my son. I loved Russian history and wanted everyone to know why hemophilia is called the Royal Disease, and then to know the story of how hemophilia changed history, and created modern history. None other than Suzamme Massie, who helped write the Pulitzer Prize winning Nicholas and Alexandria, and whose son has hemophilia, helped me!
to grow and became focused on teaching, rather than just sharing. And we had a new children’s book called Just a Boy, modeled after Dr. Seuss books. And more would come.
New Year Blessings: Dreams Can Come True!
live in the most difficult of circumstances hope and even a new beginning.
story was different.
I was stirred by the intense look on his face; his eyes seemed to bore into me.
make your life easier, expecting him to say free factor, he said emphatically and without hesitation: a vegetable selling business, to open a roadside
vendorship, to be near his son. Awesome
answer. Needs 50,000 rupees ($1,000) to start. That is an enormous amount of money for him, about one year’s salary.
with hemophilia named Chitta.