Mother’s Day Thought: Sacrifice

Today while attending church with my mother and family, I heard the priest give a homily about what mothers sacrifice in raising children. It starts before mothers raise children, with pregnancy and birth. We give up so much freedom: freedom from having our youthful body, from worry-free nights, and with hemophilia-moms, freedom from worry about our child’s future. Sacrifices of time, money, of the heart. Love is a risk. The biggest risk ever.

Some of the greatest mothers you can ever imagine are those of children with chronic disorders, especially those who live in developing countries. Today, while walking Oslo-dog, I remembered a most remarkable mom of a son with hemophilia. She lived in Nepal.

Sanu Maiya Kapali

Nepal is Save One Life’s second partner country. I had first visited Nepal in 1999 and 2000, and saw the dedication and hard work of the then newly born Nepal Hemophilia Society. I believed in the staff, and trusted them. My gut instinct proved correct: they have implemented the program to perfection.

My third visit was just six months after the devastating earthquake of April 25, 2015. I was curious to know how it affected them; what had happened. I wanted to hear their story and assess their needs. On Saturday, April 25, at noon, the tectonic plates under the Himalaya shifted, triggering a massive earthquake registering 7.9 on the Richter scale. For 50 some minutes—an eternity for an earthquake—homes crumbled, buildings collapsed, people were crushed.

More than 9,000 people were killed, and more than 23,000 injured. Continued aftershocks occurred throughout Nepal at intervals of 15–20 minutes, with one shock reaching a magnitude of 6.7 on 26 April.

Eventually everyone, including hemophilia families, lived in tents supplied by the government and relief agencies for months. More than three-quarters of the buildings in Nepal’s capital, Kathmandu, were uninhabitable or unsafe. There were 15 other earthquakes, and a recorded 386 aftershocks as of September 2, 2015, including one during my visit, that very night.

The tally of destruction of the hemophilia community was sobering: out of their known 500 members, 63 homes collapsed. Two mothers dead. One eight-year-old sister dead.

The story that saddened them and me the most was of Sanu Maiya Kapali, mother of a child with hemophilia. Sanu had volunteered at NHS for 10 years, at the care center, helping the children, and consoling the young men in pain.

She was a mother-figure to all.

She was conducting a blood donation camp at a hospital. Blood donations are often done right on the sidewalks, in front of hospitals. This sounds unsanitary and unsafe, but it’s fast and works for advertising as the hospitals are typically clogged with patients, doctors and visitors—all walking by the beds and blood collecting operations. Sanu was outside, collecting blood to help boost the supply of plasma and cryo for the blood bank. Huge slabs of concrete fell from the building during the earthquake. She was killed instantly from falling rubble, along with the two donors she was ministering to. Her photo shows a beautiful woman with a flawless porcelain complexion, dignified smile, gleaming white teeth, arched eyebrows. Aristocratic, kind. She left behind two children, one with hemophilia. Everyone knew her, and her death seems to have left a gaping hole in the strong spirit of the NHS. It was the ultimate motherly sacrifice.

Hemophilia family home destroyed

It was Nepal’s second more devastating earthquake in 100 years. Barun confirmed: “You’re the first person from the hemophilia community to visit Nepal. Thank you.”

My small sacrifice in visiting meant a lot to them, but paled in comparison to Sanu. She is a profile in courage and sacrifice, something to think about this Mother’s Day.

Help for hemophilia in Nepal eventually arrived: a factor donation from the WFH, Sweden and Project SHARE. The Mary Gooley Center (twinned with the Bir Hospital) donated $45,000, and Save One Life raised about $15,000, mostly though Facebook.

Hemophilia in Haiti: How to Help?

Many people in our community have asked me if we can do anything to help those with hemophilia in Haiti. As you are all aware, Haiti, a small country of 10 million that shares the island of Hispaniola with the Dominican Republic, was hit with a massive earthquake last Tuesday, which destroyed the capital of Port-au-Prince. The images are horrifying: hundreds of dead bodies left to decompose in broad daylight; thousands with crush injuries; thousands without food, water or shelter; hospitals collapsed, all the government ministry buildings collapsed, even the presidential palace.

I visited Haiti in 2002 with the purpose of starting a national hemophilia organization, nothing of which existed. I have always had concern about Haiti. Many years ago, when I worked as a psychologist for the state of Massachusetts, I worked with many Haitians and developed friendships and learned about their culture. I felt in 2001 that Haiti was ignored by the international hemophilia community. I was busy working with the Dominican Republic, which borders Haiti, and kept wondering about hemophilia care in Haiti. Eventually, a Haitian father of two boys with hemophilia contacted me to request factor. That’s when I planned my trip and went.

It was one of the poorest countries I had ever seen. Not much by way of infrastructure, clogged, snaking roads through the capital filled with hard working people and trucks and cars belching black exhaust. There were no beggars because there was no tourism; and it struck me how hard everyone was working. I stayed at the Christianville Mission, where the father was the director. A beautiful mission compound that had state of the art dental and optometry clinics. I stayed for a week, helped put together a board of directors, met with some doctors and found a businesswoman who eagerly wanted to help. Everyone was gentle, kind, polite and eager to start the project. I left a few pounds lighter and very happy.

Then came political unrest, and kidnappings of Americans. Everything had to be halted. My contact, the father, left with his families for a few years, and came to the states. I have not heard from him now in a few years.

So hemophilia in Haiti? There is no care. No one knows who the patients are. There was no patient registry, no clinic for hemophilia, and certainly no factor. The only factor they ever have had is what I sent from time to time, and that was quite a few years ago. There was nothing before the earthquake, and now, it will be another year, maybe more, before I can return and hopefully restart the project.

If you want to help Haiti, help it for every other reason besides hemophilia; the country and its long-suffering people need your help. Give money for the orphans, for the hospitals, for the food programs, for clean water. Give to the American Red Cross, Oxfam America, or any of the dozens of relief organizations that are now helping. Give to Christianville, the organization I worked with, which provides so much care and education for so many. Give… and pray. Haiti is filed with decent, good people who have endured decades of repressive regimes, and natural disasters including hurricanes, mudslides and now an earthquake. Why? Why always Haiti? There are no answers, except to continue to give.

I look forward to the day when I can report that we have begun our program for hemophilia again.

Great Book I Just Read/Movie I Viewed
The Road by Cormac McCarthy

I finished this book the evening before the earthquake and couldn’t help but draw parallels. A book about a post-apocalyptic world in which a father and son, no names given, walk endlessly in an ash-covered landscape, barren and bitter. They witness man at his absolute worst, struggling to survive a holocaust, turned into animals, cannibals. The writing is absolutely haunting; the book was hard to put down. I actually began and finished it in one evening. McCarthy, author of No Country for Old Men, is a literary genius. I saw the movie first, still out at cinemas if you want to catch it, which I thought was one of the best I’d seen in a long time. It’s not a feel-good movie, but it is powerfully moving in its simplicity, solitude, desperation. The ultimate story of a father’s love for his son. Three of four stars.

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