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.
Today is the birth day of Frank Schnabel, a California businessman who over 60 years ago founded the World Federation of Hemophilia. All across the globe today, the hemophilia community celebrates unity, that we are one family united by a protein deficiency that causes prolonged bleeding and suffering.
We are divided only in access to treatment. Up to 75% of the hemophilia global community has no access to factor. We are trying to close the “gap,” as the WFH puts it, by donating factor medicine to those in need.
Help continue to unite the world hemophilia community. Donate unused or unwanted factor to Project SHARE, or sponsor a child with hemophilia in poverty through Save One Life. Give back to those in need, and to honor those who have gone before us.
I just came home from the cinema, where I watched The Way Back, a film by Peter Weir, my favorite director. It’s based on the true story, documented in the book The Long Walk by Slawomir Rawicz, which I’ve read, of a young Polish man who is sent to Siberia during World War II, and endures incredible suffering. Just the train ride alone to Siberia was miserable, even for the guards. Eventually he breaks out of the camp, and walks from Siberia all the way to India. Through Mongolia, China, Tibet, over the Himalayas and finally to India, burying his fellow camp-breakers along the way. What never waivered was the young man’s humanity, his forgiveness, his hope.
You don’t need such dramatic storytelling to see such heroes. They exist right in our community. One is Biru. Now, we help scores of people with factor, and sometimes we don’t recall every person’s name. But there are some you don’t forget. This is what I read in India’s annual report:
“Posing for a photograph is one thing that Biru likes. He has lived with hemophilia for over 30 years, fulfilling his role of being the elder son in a family that has a poor, jobless father; a bed-ridden, diabetic mother; a sister in school, and another hemophilic brother.
“Life, however, takes its turns. And more often than not, they are sharp. This picture taken on July 20, 2010 is perhaps one of the last few pictures that Biru posed for.
“Today he is preparing for a big compromise, which would mean that if he has to survive, he has to pose without a leg throughout the new life this would get him!
“It is our choices, far more than our abilities, that show what we truly are!
“For Biru too, there are choices: One, he can die of hemophilia, or two, he can sacrifice one of his legs, and live like that forever. He has chosen to live because of a simple reason: ‘If I die, there would be no one to feed my family. I have to live, even if my leg goes away. Once I’m healthy, I may not move around, but I will fly high with my determination and hard work, and take good care of my family!’
“Some five years ago, a hematoma developed in Biru’s leg. Recently, when this brilliant Tinsukia boy secured the first position in Master of Science, the hematoma burst, leaving him completely bed-ridden in a painful condition. The severity is such that he cannot move, or even speak. Given this condition, the coaching classes he used to run are also closed down. Doctors have advised him a transfusion of at least 3 units of blood every day. This is to prepare him for the amputation of his leg, which, should be done as soon as possible so that further pain and suffering can be lessened.
“The operation will require at least 100,000 IU of factor, in addition to hospital costs. Biru is moving to Mumbai soon to part ways with one of his legs that helped him go wherever he wanted to. Sure, this will be a loss, and cause him great pain. However, his hopes are still alive. He is composed and determined as his eyes are fastened to the skies. ‘This is happening,’ Biru says, “because I’ve made the right choice in life!'”
What a beautiful attitude! Project SHARE will be helping with the factor to make this operation happen. Our colleagues in India are fundraising so he can pay for the operation. And just a few weeks ago, his mother died. But Biru’s spirit is strong. It has to be, to endure the mountains he must climb.
Thanksgiving is celebrated on Thursday across the United States but there are thankful people everywhere this week. One of them is Jagat Man from Nepal. Even though we helped him have a leg amputation, he’s grateful to be alive. He has hemophilia with an inhibitor and the bleeding and subsequent tumor in his leg may have killed him.
We have dozens of stories about those we have helped in impoverished countries, and we are pleased to start sharing them with you on a regular basis on Facebook. Project SHARE (Supplying Hemophilia Aid and RElief) now has its own page, and we welcome you to visit, leave a comment, and enjoy learning about your brothers with hemophilia in faraway places, where factor is usually not available.
Visit us at: http://www.facebook.com/pages/Project-SHARE/149435267732?ref=mf
You will even be able to converse with our friends around the world.
In America this week, we can be thankful for our medical care, and above all, the factor concentrate that keeps our loved ones alive. We at LA Kelley Communications are grateful for the resources to be able to send factor around the world, to those in great need and in pain. Thanks to our sponsors, and also to those of you who have sent factor. Happy Thanksgiving!
Though it’s actually Wednesday here now, I am still trying to catch up with my diary. We’ve been on the go nonstop: traveling by boat, car and plane, traversing hundreds of miles, to seek out hemophilia patients in the Philippines.
So far, I arrived in Manila, stayed three days, then went a bit south to Cebu for two days (see previous posts). On Saturday, October 18, we (Andrea Trinidad-Echavez, person with VWD and media expert), Father Don Kill of the Columban Missions here, and I headed out early for a two and a half hour ride to the ferry. We rocketed down coastal roads, catching glimpses of the sea and beaches. Our fearless driver Honorato beeped incessantly to warn people of our deadline to catch the ferry.
The scenery is beautiful: the Philippines, created from volcanic activity, is lush and fertile. Palm trees explode upward into a display of huge leaves and coconuts with a piercing blue sky as backdrop. The weather is sultry and heavy, and the sun scorching. I love it!
The ferry took us and the van across for a 30 minute ride to the island of Negros. The fishing town we disembarked on was alive with activity. We went straight away for a another 30 minute ride to Dumaguete, where we would meet staff from Little Children of the Philippines (LCP), the organization that would become our new partner for Save One Life, Inc.
Everything Father Don has told me these past two years about LCP is true. They are a nonprofit specializing in educating children in all aspects: scholastic, hygiene, livelihood and faith. Many of the staff are themselves graduates, and they are remarkably organized and efficient, yet compassionate.
When we arrived, we walked to a small pavilion, where the families and children with hemophilia waited. Now, it’s one thing to see a child’s face and profile on paper. But to meet them in person? Priceless beyond words. To me they are celebrities, children I have been dying to meet for a long time. Here before me were Allan, Ryan, Joseph, his brother Joshua, Carymar and Reymark. They greeted me with the traditional hello: each child took my hand and touched his forehead to it.
We all were seated so LCP staff could introduce us; Father Don also spoke to the children, all of whom he personally identified in his quest to help those with hemophilia in the Philippines. The children honored us by singing (karaoke is huge here!) and Father Don also knocked off another Elvis song. The parents also got up and together sang a gorgeous song called “Give Thanks,” with spiritual themes. Three mothers than each took the mic, and in tears, thanked Save One Life and Project SHARE for helping their children. Their cries were gut wrenching, and gave only an inkling into the level of the pain they see in their child.
In the midst of this, one boy, Reymar, was not well. He kept his head down by his feet, his shoulder dropped. He was having a severe bleed in his right shoulder. We hurried him to the clinic at LCP, but he needed factor. We had none. So here was a Third World crisis right in front of us: what do you do? He has a major bleed, needs factor, and must settle for cryo or FFP. There is no cryo. FFP costs $30 a bag. He might need 10 bags. His mother sat in despair sobbing while her 15-year-old boy writhed and moaned. It’s not just a matter of going to the hospital to get treatment. She doesn’t have $300. We made a decision then and there to pay for whatever treatment he would get. While they prepared to move him, Andrea knelt down with the family, held their hands and with powerful calm, said a prayer with them.
When they had left, we all felt a bit disconcerted. This was the future of these kids staring them in the face. When they get hurt, what will happen to them? They can see how they cause their mothers so much pain, too. We turned to happier things, like lunch, and then the kids all made incredible thank you cards for their sponsors. I oberserved that Filipinos, in addition to being musically oriented, are extremely creative and artistic. True, agreed the Filipinos present, and they loved to hear that.
We took photos of all the Save One Life boys, and some taped thank you speeches to their individual sponsors: Diane H., Patrick S., Kyle C., Joe C. and John J. of the USA.
Finally we headed out, and LCP agreed to take on all the sponsorship responsibilities in the Dumaguete area as our new partner. Instead of relying on Father Don all the time, we will now use LCP. Father Don, mind you, is busy enough running a home for 26 teens. Like many people, once he met a child with hemophilia five year ago, he could not say no, and has since helped us identify patients and get them treatment. No doubt he has saved lives and much suffering through his actions.
We returned to the hotel a bit amazed at the day. Sobering. It must have worn us out more than we thought: I for one slept 10 straight hours, the first time I have actually been able to sleep since coming here. And I actually felt guilty when I awoke: how many Filipino mothers that night had no sleep because their children cried in pain from untreated bleeds?
The good news the next morning was that Reymar was treated. We purchased Koate DVI, to the tune of $300 for 1,000 IUs for a poor boy. (The pharmacy in this remote place actually stocks it as there is a middle class family in town that pays for it–more on that next time.) There is so much more to be said about the billions made off factor sales, and how little of it will ever come to the majority of people who need it most, who suffer pure agony. I am this week in the rural areas of the Philippines, where life is already harsh, and where children with hemophilia need help every day. Project SHARE donates directly to these children; Save One Life gives them the money to buy FFP or factor or transportation to the clinic. If you can help me to help them, please let us know.