Save One Life

Our Christmas Carol 2018

Jose Pepito of the Philippines

Merry Christmas! Happy Hanukkah! Happy Kwanzaa and to all, Happy Holidays!

In holidays past, we used to send out Christmas cards to everyone. We loved doing that and we love receiving them. As we have grown, and have expanded our humanitarian programs more internationally, we are seeing so many desperate needs. We decided instead to send a holiday e-card, with a story of someone in need we have helped. Instead of the usual $1,000 on cards, we are channeling this money and more into urgent needs at the holidays. We hope you understand and approve. We’re calling it our Christmas Carol! As you know, in Dickens’ A Christmas Carol, Scrooge by the end was doling out his money to help those in great need, especially Tiny Tim, who had a chronic disorder. And he discovered love and joy in the process.

 

Our “Christmas Carol” this year was helping Jose Pepito of the Philippines. Jose Pepito is 48, has hemophilia and inhibitors, five young children, and is single; his wife abandoned the family five years ago. His heartbreaking story is right from a Dickens novel.

He was orphaned early; his mother died while giving birth to him. His father died when he was nine.  After his siblings abused him, he 

left home at 16 and lived on the streets. He learned to drive a tricycle (called a tuktuk) at age 19, and used it to transport people. His ankles and knees took a beating and he endured many bleeds. He also survived an appendectomy, gallstone operation and a head injury! 

He now lives in a slum, as a squatter. It’s known as a drug haven, making it difficult to visit him. But Andrea Trinidad-Echavez, a woman with VWD and founder of Hemophilia Advocates-Philippines (HAP), dared to visit him, to photograph his conditions, and ask for help from us.

Jose Pepito suffered a psoas bleed—horribly painful—and pseudotumors. In November, the family’s tricycle – their main source of income – was taken by lenders after their father failed to pay monthly amortizations. Most importantly he needed an operation, which required the expensive and rare inhibitor drugs. HAP reached out to us, and we provided over $200,000 worth of medicine for his operation, thanks to inhibitor medicine donations from you all!

Andrea asked Jose Pepito what would be a good livelihood, since he is unable to use a tricycle now? He said a small store, as he lives in a colony. He can have a decent store with $1,000. “We will be providing his family with weekly grocery in the meantime,” Andrea said. “Right now, the kids are begging from their neighbors, just for them to eat!”

 We forwarded the $1,000 for food and necessities. And we will get him a grant from Save One Life for a store. Merry Christmas, happy holidays and God bless us all!

You can help someone like Jose Pepito too!     www.saveonelife.net 

 

“And how did little Tim behave?” asked Mrs. Cratchit, when she had rallied Bob on his credulity and Bob had hugged his daughter to his heart’s content.

“As good as gold,” said Bob, “and better. Somehow he gets thoughtful, sitting by himself so much, and thinks the strangest things you ever heard. He told me, coming home, that he hoped the people saw him in the church, because he was a cripple, and it might be pleasant to them to remember upon Christmas Day, who made lame beggars walk, and blind men see.” 
― Charles Dickens, A Christmas Carol

 

 

 

Bombardier Blood: Incredible Journey with a Cast of Characters

Coincidences are God’s way of staying anonymous. Albert Einstein 

Yesterday I was in Denver, Colorado, to attend the hometown premiere of Bombardier Blood, the new documentary that chronicles the life and achievement of Chris Bombardier, a person with hemophilia B this year who became the first person with hemophilia to complete the Seven Summits. The movie was debuted at NHF’s annual meeting in Orlando, in October, to an audience of over 500.  Yesterday, the Colorado Hemophilia Society rented an IMAX theater, and invited the Colorado bleeding disorder community to attend.

Chris and Jess Bombardier with Laurie Kelley and Amy Board Photo: Rob Bradford

What a proud day for Colorado! Chris and his wife Jess attended, flying in as I did from Boston, which recently became their new home. Chris’s whole family came: parents Alan and Cathy, Aunt Bev and Uncle Jay Labe and cousin Nicole, and of course, “Crazy” Uncle Dave. And while Chris’s whole family is incredibly warm, down-to-earth and personable, I really wanted to meet this character Uncle Dave! When you see the movie—and you will someday—you will know what I mean!

Chris’s poster is right next to Bumblebee’s and Aquaman’s!

We congratulated the astounding film-making and editing team of Rob Bradford and Steven Sander, who were both present, and thanked expedition and film sponsor Octapharma. The theater filled with community members—moms, dads, small children, and many of Chris’s peers with hemophilia—holding popcorn, soda and high expectations. We settled into our seats before the mammoth screen, hushed our voices, silenced our cell phones, and the theater darkened. The darkness faded into a scene of Everest, prayer flags, snow and ice, and Chris, trying to skewer a vein in the icy air. The film continued from this moment at Everest, into a 90-minute tale of what it took to get him there. It is a fascinating story of a boy with hemophilia who dreamed of being a baseball player, who was thwarted in his dreams, who suffered depression, anger, who was disconnected from his own local community… until key events unfolded in sequence, “like divine intervention,” one audience member confided. The events included the right people appearing in his life at the right time, until his destiny seemed all but spelled out. This young man would conquer Everest.

Chris’s proud parents, Cathy and Alan

I took part in Chris’s journey at some point, and have seen this movie three times now. It never fails to inspire. You want to jump out of your seat and get moving, to find your own dream, and then make it happen. If Chris could climb the Seven Summits (a feat only about 450 humans ever in history have done!), and did it with hemophilia, then what can the rest of us accomplish? We are only limited, it seems, by our own imagination, and our belief in ourselves.

The audience loves it! Photo: Rob Bradford

But some new footage was added to this version of the film—the role played by the vivacious and energetic Amy Board, executive director of the Colorado Hemophilia Society. Amy was the person who drew Chris out from the crowd. She encouraged him to come to hemophilia camp, where Chris met someone else with hemophilia for the first time. He saw how the children were active, happy, connected. And Chris became connected. He volunteered at camp, became a mentor to the children. Due to Amy, Chris became part of the hemophilia community. It was the first major step on the long hike to better mental health, a career, a new vision… and ultimately Everest.

Laurie Kelley meets Crazy Uncle Dave!

Chris did not just scale the Seven Summits or make a movie about himself; he has promoted hemophilia worldwide with his life-risking achievement, and he has made a call for action for others, to help those in developing countries through Save One Life. Without Amy, without camp, he might not have joined the community. Without working at the Indiana HTC as a lab tech, he might never have gone to Africa, where his eyes were opened to the suffering of his blood brothers overseas. Without Uncle Dave? Who knows. Bombardier Blood boasts a cast of supporting characters who embody this mystical truth: We never know what ripples we create when we reach out, take a risk, and care about another human being.

Chris did it. He made history. First person with hemophilia to scale Everest, and to bag the Seven Summits. And I suspect that Chris’s story is far from over, but is really just beginning.

Chris with photographer Rob Bradford
Laurie with Octapharma reps Paul Wilk and Elizabeth Pulley
Laurie Kelley with photographer Rob Bradford and film editor Steven Sander

         

 

 

 

 

 

Thank you, Barry!

On Friday I went for a 32-mile bike ride, on my usual route that winds through back roads of the north shore of Massachusetts, out to Plum Island to the ocean. It’s a ride I did with Barry Haarde twice, and I thought of how he pushed me into cycling longer than my usual 12 miles, and faster than my usual 13 mph. I actually clocked myself at 15.7 mph. Not bad for age 60.

Last Sunday, August 12, we gathered on a different beach, Odiorne Point in New Hampshire, to remember Barry and his amazing contributions to our community and in particular to the nonprofit I founded, Save One Life. About 50 people from all over the country: California, Connecticut, Denver, Texas, Washington DC and Barry’s family from Florida, trooped in with bicycles to recreate the last 10 miles of his first cross-country journey.

Martha Hopewell, executive director of Save One Life, gave a deeply stirring speech that highlighted Barry’s achievements and impact:

“It was just seven years ago, on this very same day, we celebrated Barry’s first ride across the US at Laurie’s house. We toasted his 3,667 miles and had no clue, at that time, that he would ride 16,728 more or, for that matter, raise over $250,000 for Save One Life!

“Barry’s accomplishment comes after much physical hardship. Barry contracted HIV in the 1980s from contaminated blood products used to treat his severe hemophilia. He also contracted hepatitis C, which required four years of grueling interferon treatments, during which he almost lost his life.” Barry didn’t publicly reveal his HIV status until 2008. “Once Barry made that courageous choice, however, he has been an increasingly vocal advocate for the hemophilia and HIV communities ever since.”

Martha Hopewell, Director of Save One Life

“When Barry undertook his first tour in 2012, he rode for 50 days through ten states and Canada. In addition to raising funds to help needy children, you all know that each day he rode in memory of family and friends lost to AIDS. When Barry finally dipped his wheel in the Atlantic after his first comment was, “Let’s do it again next year!” “And so he did, with the team at Save One Life, his employers at Hewlett Packard and many supporters encouraging him as he overcame physical and psychological barriers to make history. Barry’s goal was to ride through every state. He didn’t quite make it, but his Wheels for the World rides got him to 37 of them…not bad at all!” “We celebrate Barry today. We will forever cherish his enthusiasm for riding and his passion for his blood brothers and sisters around the world. He is here with us at this very special memorial. God bless Barry, and all those in whose hearts you will always live.”

We lost Barry in February. Not everyone knows this, but he took his own life. Despite his beloved status in our community, his fame, with years still ahead of him, he could not outride the darkness that dogged him. Teddy Roosevelt, one of our most accomplished of presidents, and an athlete in his own right, suffered from depression, and wrote, “Black care rarely sits behind a rider whose pace is fast enough.” Barry once told me, “Endurance athletes like me aren’t always heading towards a goal; we’re often running away from something.”

As I rode back from Plum Island on Friday, I could vividly see in my mind Barry ahead of me, his lanky figure balanced on his carbon-framed steed, his left hand shooting our and pointing downward each time we neared a pothole or a crack in the asphalt. His way of warning me of danger ahead. I thought, maybe his legacy is not so much how much money he raised, but of the need to be aware of our community’s potholes and cracks—the mental health issues, particularly depression, that lurk insidiously in our community. I hope addressing these becomes Barry’s true legacy.

Read the press release about the even August 12. Link here https://www.prweb.com/releases/cyclist_barry_haarde_honored_for_his_legacy/prweb15699984.htm

Thanks to our co-host, New England Hemophilia Association, to board members Ujjwal Bhattarai and family, Myrish Antonio and husband Jojo, Chris Bombardier and wife Jessica for attending, to our staff at Save One Life (Martha, Jodi Kristy), to all of Barry’s dear friends who attended, and to Shire and Aptevo Therapeutics, The Alliance Pharmacy and George King Bio-Medical for making this event possible. 

Martha also added thanks to the corporations that sponsored Barry’s rides over the years. The biggest sponsor was Baxter/Baxalta, which contributed almost 40% of Barry’s total with $100,000.  The Alliance Pharmacy distinguished itself as being the only company to support all six of Barry’s rides for a total of $30k.  Biogen/Bioverativ, Bayer Healthcare, George King Bio-Medical, Amerisource Bergen, Matrix Health Group, Aptevo Therapeutics, American Homecare Federation, Emergent Biosolutions and Optum Rx also contributed to this success.

 

Wheels for the World was championed by the Lone Star Chapter of Barry’s home state of Texas, Hemophilia of Indiana, NEHA and Sangre de Oro. The Colburn Keenan Foundation also gave in 2014.

 Most special to Barry were the nearly 250 individuals who gave to his effort. Priscilla Oren was the first donor of every ride! She is joined by Kevin Anderson and Lisa Schober who devotedly donated to all six rides.

 

 

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