May 2012

Memorial Day with a Memoir

I often think of Memorial Day as a time not only to think of those who died serving our country, but of those veterans from the hemophilia community, who died from HIV, or who are still fighting the good fight, so that our sons could live. Their infections and/or deaths expedited the call to identify the virus that stalked the blood supply, and to find treatment fast.

Bob Massie is one of those. And he’s written about his experiences in a new autobiography called A Song in the Night: A Memoir of Resilience (Doubleday, 287 pages, $24). I urge you to buy it and read it. It’s the newest book in the hemophilia marketplace, and it is a gem.

You may know of Bob from one of several places; he’s a rolling stone, despite his health issues. Episcopal priest, author, researcher, politician, human-rights activist, father of three, nonprofit leader. You may recognize him as one of the people profiled in 2010’s documentary Bad Blood. You also may have met him first like I did, through his parents’ book Journey, from 1973. Journey was truly the first book about hemophilia, told in alternating chapters from the parents, Pulitzer-Prize winner Robert K. Massie and then-wife Suzanne Massie. This stunning book put hemophilia on the map, and revealed painstakingly what it was like in the 1960s and 70s to raise a child with this rare genetic blood disorder.

Bob now shares his own perspective on his life and also continues where Journey left off. Without a shred of self-pity, he shares the searing pain that left him crippled as a child; the loneliness of being left behind and unable to participate in school or playground activities like the other boys. Not surprisingly, but admirably, he turned his suffering into something greater, something that would eventually benefit many. Bob became a crusader against social injustice in its many forms (his influences reached South Africa at one time) and despite his physical limitations, he achieved more than an average person would, without any limitations. His list of accomplishments is stunning, leaving the reader feeling a bit inadequate: if a person who spent years ill in bed could do all this, what’s our excuse?

Bob has excelled in many areas and following a successful lived transplant two years ago, is going stronger than ever as president of a nonprofit, following a year of campaigning for US Senate. Despite spending years in a drug-induced wait for a new liver, watching life pass him by, he is back, strong and focused, and continuing still to make a difference. A Song in the Night is less a memoir of what life did to him, but rather how he has made a life despite so many hardships and setbacks. Bob references his faith often, which has been unshakable and contributed to his desire to overcome his illnesses and in turn, help others.

Like our war veterans, Bob Massie has served on the front lines, earned his battle scars, works to make the world safer and better, and above all, is inspiring. He inspires us, I think, to see the challenges we face, however hard, as perhaps a calling from Above, a way to persevere and then to serve our fellow humans, with love. In one passage of the book, Bob describes his ordination as a deacon. The bishop looked him straight in the eye and told him his responsibility, his mission, was “to serve all people, particularly the
poor, the weak, the sick, and the lonely.” Bob has accomplished all this, and more.

This is a well-written book, full of history, personal narrative and profound inspiration. We should be proud of Bob Massie in our hemophilia community; he has overcome, with his unconquerable soul.

Save One Life’s Gala: Honoring the Massies

Save One Life honored the Massie family Thursday night at its second annual gala. About 150 guests arrived at the Commons, in Topsfield, Massachusetts under sunny skies to enjoy cocktails, dinner, business networking and to honor the people who have helped make Save One Life so special.
Nelson Escoto, president of Bleeding Disorder Resource Network, received Sponsor of the Year award, for supporting a sponsorship for each new patient he receives on his service. The lobby wall at his office is covered with photos of their beneficiaries. Before the night was over, Nelson would sponsor 5 more children with hemophilia!

The elegant dining room
Laurie Kelley as host
Guests enjoy the good New England weather
The Massie family
Bob Massie accepts his award

Adriana Henderson, founder of STAR Children Relief, won an award for Program Partner of the Year for her work in Romania, where Save One Life has many beneficiaries. Her photos of the children brought tears to the eyes of many in the audience. Laurie Kelley made a special plea to the audience to help raise an additional $2,500 to meet the cost of camp this year, only a few weeks away. By evening’s end, all the funds were raised. Sasha Zatyrka, director of the Colburn-Keenan Foundation, presented Adriana with a $1,000 check.
The highlight of the evening was duo awards presented to mother-son team of Suzanne and Bob Massie. Bob Massie was given an Inspiration Award first, for his life of public service, particularly in representing hemophilia to the public. Bob’s newest book, A Song in the Night, a Memoir of Resilience, was just released and Doubleday Books generously donated copies for each guest. Bob, a gifted orator, share a story about his childhood to highlight how his mother Suzanne kept his faith and hope alive that he would be okay despite his hemophilia. Bob has a long list of accomplishments that would exhaust an average person, let alone one with multiple chronic illnesses and frequent setbacks. He most recently ran for US Senate, and now is president of a nonprofit.

Attendees enjoy dinner
Nelson Escoto, president of BDRN, accepting his award as Sponsor of the Year
Sasha Zatyrka presents a $1,000 check from the ColburnKeenan Foundation for the Romanian Camp Ray of Hope
Adriana Henderson accepts her award
Bob and Suzanne Massie autograph their books
Suzanne Massie is co-author of Journey, the first book about hemophilia in America, which poignantly details life with a child with hemophilia in the 1960s. She became an expert on Russia after helping research and write Nicholas and Alexandra. She went on to author several books about Russia, still in print today. She created the Firebird Foundation to help youths with hemophilia in St. Petersburg, Russia, and as Laurie pointed out, was the inspiration for Save One Life. When Laurie worked with Suzanne on the Firebird Foundation, she saw first-hand what one woman could do to change the lives of so many in need. Suzanne has a new book in the works, about her years advising president Ronald Regan on Russia as the end of the Cold War was coming.
In a warm and gracious speech, this elegant lady still showed the passion which drove her to accomplish so much and change the lives of so many. The audience was mesmerized and gave her a standing ovation at its end. It was a great privilege to have the ever-active Massies with Save One Life for the evening, and to present such well-deserved awards. The evening ended with book signings, and the silent auction, and many, many happy memories
Laurie presents the Inspiration Award to Suzanne Massie, author, humanitarian, presidential advisor
and pioneer in hemophilia

A Mother’s Journey

Today is Mother’s Day, a special day for mothers of children with chronic disorders, like hemophilia. The sacrifices and suffering they endure creates women of strength and compassion, and they deserve to be celebrated. Me? I was treated to “The Avengers” by my three children, with an extra large popcorn and soda. Perfect way to celebrate!

And a perfect book to read this week is Journey, by Robert K. and Suzanne Massie, first published in 1973. The intimate story of a young couple facing the diagnosis of hemophilia in their infant son, Journey has become a classic in hemophilia. It is, arguably, the first book written about hemophilia. It slowly unveiled the suffering and disruption hemophilia causes, and what life with hemophilia was like before the advent of clotting factor. The story is written in alternating chapters by Robert and then Suzanne. They each have distinctive styles. Robert shares the history of hemophilia, the genetics, the science behind it and the treatment. He also delves into the blood banking industry, and the shocking policies and politics of blood. Suzanne shares the family’s story, day to day, and the exquisite pain a mother experiences while watching her son suffer through the night.

But these are not ordinary parents. Robert K. Massie is a Pulitzer prize winning author, and having a son with hemophilia and being a writer at Newsweek, led him to research and eventually write Nicolas and Alexandra, the captivating masterpiece about the last Tsar of Russia, whose son also had hemophilia. It reads at once like a great historical novel, highlighting the tragic love story between the two royals, and postulates how hemophilia might have contributed to the downfall of the empire and the take-over by the Bolsheviks. Suzanne helped research and edit the book extensively, and in time, became an expert on Russian culture and history. The family gained notoriety when the book was published and then made into a Hollywood movie.

The story concludes when their son Bobby is 18. Later editions included an update: Bobby survived, contracted HIV and hepatitis C, attended Ivy Leagues colleges and became an Episcopalian minister. He also became a social activist (most notably against South Africa’s apartheid system) and a politician, running for Lieutenant Governor of Massachusetts, and later, the US Senate. He has dedicated his life to public service and has accomplished so much.
Suzanne, his mother, became an author in her own right, on Russia, and later became President Ronald Regan’s advisor on Russia during the Cold War! She could never have seen where her journey as a young mother of a child with hemophilia could have taken her.
As mothers of children with hemophilia, we know the limitations our sons can sometimes face. Reading Journey makes you appreciate what is possible, how much we as women can endure as mothers, and gives hope that despite the suffering, crippling, hospitalizations, pain and days or weeks lost from school or work, all things are possible. Suzanne is an extraordinary mother who raised an extraordinary son. 
I am very proud to say that we will be honoring this mother and her son at our second annual spring gala for Save One Life this Thursday in Topsfield, Massachusetts. This is another story to add to their journey. Suzanne is now 81, lives in Maine, and is still writing! Bob has just published his memories (which I will review in a future blog) and Suzanne hopes to publish her story on being Regan’s advisor.  It is an honor to know this mother and to celebrate her life and accomplishments on Thursday.
Happy Mother’s Day to all those with children with hemophilia!
You can order used copies of Journey through; the book is out of print and new copies are not available.

Gap? Try Chasm

When you prepare to hop on or jump off the “tube” in London, the underground train’s speaker system says in a very sexy voice (aren’t all British accents so), “Mind the gap.” The gap is that space in-between the platform and the train, so yes, you’d better mind the gap or else. Stuck in there and you could lose your leg or life.

Closing the gap was the theme of this year’s World Hemophilia Day, celebrated April 17 all over the world. Mostly it’s a way to unify our diverse and dispersed community, and also to raise public awareness. My favorite activity this day to date was last year, when Romanians turned the major fountain in Bucharest red with food dye, representing blood. And all over the world you see posters of kids with swollen joints, and things like that.

Here’s my poster representing the gap: real life Kirby, age 10, from the Philippines. This poor child languished in a hospital bed in a far off province, with gangrene in his leg just two years ago. Doctors didn’t even know he had hemophilia. Only when he was accidentally discovered by Andrea, one of our colleagues there, did anyone suspect he had hemophilia. Project SHARE sent factor VIII and he had his leg amputated. And that’s the good news.

He looked healthier post-op, and he survived. He was enrolled in the hemophilia society. But yesterday I received an urgent request from his doctor: Kirby’s leg is infected again. Send more product, 100,000 IU so we can amputate. Again.

Kirby, or rather his leg, is stuck in the gap. No products available in the Philippines. Hard to imagine: we had a military base there. People speak English there. The Philippines has been our ally for decades, a springboard that buffered us from military threats from the east. But they have never qualified for our medical care.

And the Philippine hemophilia communities are not yet lobbying their government for their right to get factor. What will it take? Boys with hemophilia are dying every month in the Philippines. How many boys must die before they realize they’ve got a huge problem and are willing to do something consistently about it?

And we don’t have 100,000 IU. Where are we going to get 100,000 IU from?

The gap at this point looks like a chasm. Kirby could very well die without the factor to amputate again. Andrea wrote to me tonight in fact, and told me about an upcoming meeting this month that will put the issue on the table. Enough is enough: you can only close the gap when patients come together, decide they have a right to factor, and then present this to the government, and keep on pressing it.

Russia did it. Brazil did it. India did it. Even little (and poor) Honduras did it. The Philippines can do it too, if they want to.

But it may not be in time for Kirby. When I think of Kirby’s case, I don’t think of closing the gap, it’s more like Touching the Void, a chasm cut into a mountain that divides the haves from the have-nots. And even if we donate all 100,000 IU by some miracle, there are more Kirby’s. There are only three ways to close the gap: lobby, lobby, and lobby.

(Anyone with any factor VIII that is unwanted or unused for medical reasons, please ship to us ASAP)

Great Book I Just Read

The Time Machine by H.G. Wells (Kindle)
This science fiction classic is timeless, no pun intended, and available for free on Kindle. Wells indeed is the father of Science Fiction, and created the genre with this, his first novel. A Victorian man, only referred to as the Time Traveler, invites his scientific and literary colleagues to dinner at his home, but arrives himself late and disheveled. He shares his bizarre and fabulous story: he has built a machine that allows time travel. He went into the future, the year 802701, to what he first thinks is Utopia–no one worries, no one works, everything is shared, people seem at peace. But not so: mankind, rather than reaping all the benefits of accumulated scientific knowledge, has become two races, the Eloi, gentle, child-like simpletons that have no culture, reading or seeming purpose, and the Morlocks, hairy, snarling, subterranean ape-like creatures that actually work machinery and harvest and cannibalize the Eloi. Wells, through carefully crafted and beautifully scripted prose, weaves an amazing story about mankind’s future, and the perils of advanced civilizations and communism. Wells’ sci-fi is a vehicle for his critique on social systems. A fantastic book by a literary genius. Five/five stars.
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