Diamonds in the Slums

To me, there’s nothing more rewarding or satisfying than to travel through clogged urban streets and alleys, or jostling out on half finished roads, or sometimes no roads, in the broiling heat to visit hemophilia families in their homes. It’s like hunting for elusive diamonds. Amidst the trash, slums, poverty, sweltering humidity, you sometimes get an unexpected surprise that makes it all worthwhile. We had three of these happen to us in the Dominican Republic following camp last week.

Last Tuesday we visited a family right in Santo Domingo, the capital and the oldest city in the Americas. That’s right: this is where Columbus came four times during his voyages, to the island of Hispaniola. Dominicans are a beautiful blend of European, indigenous people, Africans (brought as slaves) and Spanish. Santo Domingo is home to the first hospital in the Americas, featured here, now in ruins.

I think we saw all these nationalities in the Torrres family. We met all three children: Alexander, Bryan, and Victor. Alexander and Victor had been at camp with us all week– but no one knew they were brothers! They have different last names, and this underscored the need to get the national registry more precise. The foundation FAHEM needs to be able to know that two children are brothers, not from their names, but also from their shared address.

The family lives in a two room dwelling that they rent. Rent is 40% of their $95 a month income. Try to think how to live on that with three kids with hemophilia! It boggles the mind. Only the father works. The young mother stays home, though there is little to do when there are only two rooms. She spends all her time with the children, shuttling them back and forth to the hospital. We are enrolling all three children in Save One Life.

On Wednesday, we started our day by visiting the de Jesus family, in the barrio La Cruz. It was about a 20 minute ride outside the capital. Rural poverty is quite different than urban poverty. In some ways it’s worse, because you lack plumbing and water. But then, there is space, more quiet, more nature. Damaris lives in such a place: a two room house with a tin roof that cooked the kids inside like a microwave. Haydee de Garcia, founder of FAHEM, the Dominican hemophilia society, and I were sweating by the time we hiked up the little hill to see her. With us was Haydee’s nephew Luiggi, who served as our translator.

No refrigerator, no bathroom, no running water. And yet, her tiny house was as clean as could be, with flowers on the small kitchen table, and the floor swept. The children were clean, and Damaris was carefully groomed. I was very impressed. Wilmer fussed, and I bent over to whisper in his ear. Maybe he can hear; he calmed down quickly and his eyes grew wide. My first job out of college in 1980 was working with mentally and physically handicapped children and adults, so I am used to being with and caring for these children. I’m not shocked and I don’t do pity, but I can empathize. Both boys have hemophilia. To bring Wilmer to physical therapy each week, Damaris has to carry him in her arms on the public bus, and then walk. As a result of his disability, Wilmer’s back is rigid and his limbs taut. It cannot be easy at all to bring him. I tried to hold him and it was nearly impossible. And she knows she has a lifetime of this ahead of her.

When we entered the house, it was allegedly to see Darling, Damaris’s five year old. What we did not expect was that her other son, Wilmer, age 18 months, had something wrong with him. Damaris told us that just in February, her baby with hemophilia had a spontaneous head bleed. She rushed him to the hospital, but he was in a coma by the time she got there. Now he was permanently brain damaged. He is blind and she does not know how much he hears. We were saddened by this tragic situation in front of us: Damaris and her husband earn only a little, have no luxuries at all, not even a fan to keep her baby cool. Inside the small house, the temperature was about 90 degrees, and there was no way to keep away the abundant and voracious mosquitoes that nibbled on our ankles.


But Damaris never complained and was humbly grateful when we told her we would find sponsorships for both boys, giving her an additional $40 a month. We first decided they needed a fan more than anything, to keep the baby cool. And we gave her the money on the spot. With many hugs and smiles, we left for the next family.

Further out into the country, we came to the De la Rosa’s house, a lovely but modest home on a dirt road. Three big boys with hemophilia: Anderson, Alexander and Anthony. Their sister, Angelina, sat in on the visit. The boys are all in their late teens and look fantastic. No joint damage, well developed musculature. It got me wondering. These handsome guys didn’t look quite–normal.

As we did the intake interview for Save One Life, I started asking about their extended family. One sister died in childbirth. Uncontrolled bleeding. Another died from her period. These boys don’t get joint bleeds but get a lot of nosebleeds. Haydee and I looked at each other: could they have von Willebrand instead of hemophilia?

We asked them to get tested at once so we can get their diagnosis straight. We have held off getting them sponsorships until this is done. But all in all, I was thrilled that we made the visit. They were diagnosed about 10 years ago, and could very well be misdiagnosed. Though the mother said that factor VIII concentrate “works” on the boys, it could well be that a product was used that contains von Willebrand factor.

A surprise: they don’t have hemophilia but VWD!

I wish we had time to visit every patient, in every country. Home visits are the single most important thing I can do, and I love doing them. In these three visits we learned something new, something important, and something the national foundation needs to know. And the stories we hear make us humbled, grateful and better people. As Mother Theresa once said, “The poor have much to teach us.”

See photos from the entire trip here.

Great Book I Just Read: Krakatoa by Simon Winchester
One of the world’s worst natural disasters took place on Monday, August 27, 1883, when the small island of Krakatoa in the Sunda Strait near Indonesia exploded and destroyed itself. The blast– believed to be the loudest sound ever known–was heard thousands of miles away and killed over 36,000.

Author Simon Winchester is a geologist by education and trade, and now is an engaging writer. The book is not about a disaster, as much as it is about geology, and the science of volcanoes and the earth, which I found to be absolutely riveting. I never knew about this and I cannot wait to learn more about Mother Earth and from where this self-destruction originates.

You’ll learn about subduction and tectonic plates, about how only recently did scientists agree that the earth’s plates are moving! You’ll learn about early trade in East Asia, and about Indonesia in the 1800s. Winchester even ventures to say that the devastation, and the poor handling of it by the Dutch, left the door open for radical Islam to invite itself in. Indonesia is now the most populous Islamic country on Earth. How nature changes politics.

I loved this book, but I can critique it on two things: first, Winchester has a choppy style, and the book swings like a pendulum from this topic to that. Sometimes it seems that the eruption is only a blip, a thing standing in the way of his discourse on geology. The second, most disappointingly, is that although 36,000 died, you don’t hear about any of their stories. They are not as important as the rock, the plates, the volcanoes. I kept waiting to read about the people, what happened to the people? Hardly a word. A chapter about the victims—who were they? Who survived and how?– would complete this amazing story. Three stars.

Suffer the Little Children

Many of you know I travel to some extremely impoverished places in the world, helping kids with hemophilia. On these trips you eventually get over the shock of seeing humans defecate in public, sleep in huts with no screens against insects, sleep 10 to a room, live in slums, filth, and suffer from lack of food and sanitation. But when you see that in developed countries, now that’s the shocker.

Just this week we had two stories that show that even our own countries have their own kind of poverty.

The Daily Telegraph, Australia, on June 9, 2009 reported “Mum neglects kids for internet lover.” This is like the Octomom gone wild.

“A mother who left her eight children for more than a week in ‘life-threatening’ squalor with a former de facto while she chased an internet lover has avoided jail today. Despite describing the neglect as ‘extreme,’ Magistrate Helen Barry suspended the 33-year-old mother’s 30 month jail sentence, and her ex de facto’s 12 month jail term over seven charges of abandoning her children.

“The former couple pleaded guilty to their neglect in Katoomba Local Court today, where she sat silently next to him while he was given a two-year good behaviour bond instead. The mother had asked her former 41-year-old de facto to look after her children while she flew to Melbourne to meet another potential lover she had met on the internet. But he told police he could not take on this responsibility because he was in hospital.

“Magistrate Barry described the horrific condition the children were found in her house as “squalored, putrid and uninhabitable”, while littered with dirty clothes, nappies and food scraps and contained broken glass from shattered windows, bottles and a shower screen. When police arrived on September 9 last year, the two youngest children aged three and four were running around in the front yard wearing only nappies. Inside, life-saving medication for six of the children who suffer hemophilia remained locked in a cupboard in the mother’s bedroom.

“Magistrate Barry … said the community had a right to be outraged and ‘any alternative to a custodial sentence would in
my view fail to reflect the objective seriousness of the offence.'”

You can read the original at http://www.news.com.au/dailytelegraph/gallery/0,22056,5057742-5010140,00.html

And of course, the pictures almost say it all.

Then we have this in from Portsmouth, New Hampshire, June 11, 2009.

“Police say 3-year-old Portsmouth boy was underdressed, in dirty diaper when found alone in car.”

“Police say Jacqueline Hanscom’s 3-year-old son was underdressed, dirty, covered in dried blood and in a feces-filled diaper when the boy was found by an Anne Avenue resident inside a car. Hanscom, 20, of 55 Anne Ave. has described her child’s wandering an “honest mistake,” but a police affidavit indicates the child appeared neglected when he was discovered in another resident’s vehicle on April 13.

“An affidavit filed by responding Portsmouth Police Officer Laura Purslow indicates she found the child outside the family’s residence wearing nothing but a diaper and socks in 43-degree weather. ‘His nose and mouth were covered in dried blood and his diaper was so full of feces that I could see it through the sides of his legs,’ Purslow said.

“Purslow states in the affidavit that during the time she was on the scene the mother made no
attempt to clean up the child or change his diaper. Hanscom, a married mother of two, characterizes the incident as an honest mistake. In a May interview with Foster’s Daily Democrat she expressed shock police are charging her in connection with the incident.

“‘It’s unfair … I’m a good mother. I’m not a bad person,’ Hanscom said in the May interview. Hanscom told Foster’s her son often acts out because he suffers from Von Willebrand disease, a type of hemophilia in which blood doesn’t clot normally. She said her son, Chad, can’t perform most physical activities, and she and her husband constantly have to remind him of that.

“He’s got von Willebrand” excuse for why a three year old needs to be strapped into his car seat for hours? Changing his diaper might make him bleed, apparently. I’ve been to some pretty poor places, and have seen some sad things, but this reminds me there are worst things than physical poverty. Intelligence poverty and emotional poverty trump anything I’ve seen in a third world slum. When a child has someone who truly loves him and feeds his soul, he can withstand just about any material hardship, including hemophilia.

Great Book I Just Read: The Lost City of Z by David Grann

This page-turner tells alternating parallel stories: of the heralded 1925 exploration to find “El Dorado” by British explorer Percy Fawcett in the tangled rain forests of the Amazon, and of the almost unknown 2005 quest by journalist David Grann to find Fawcett and unravel the mystery of his disappearance. Fawcett’s disappearance made headlines around the world, as he was not alone in believing that the dense and impenetrable Amazon held a glittering city of gold. “El Dorado” means “gold man.” Its legend grew as thousands had died looking for it already, and Sherlock Holmes’ author Conan Doyle wrote The Lost World, based on Fawcett’s previous (failed) explorations there.

What makes the story so amazing is that Fawcett seemed immune to whatever the Amazon could throw at him: malaria, bacterial infections, piranhas, lack of food, harsh conditions (it makes polar exploration look like a walk in the park!) and above all, hostile Indian tribes. No one ever learned definitely what became of Fawcett or his 25-year-old son who went with him, though Grann does a fine job wrapping things up at the end. Still, it’s not hard to see what might have happened. This is a great book. Fawcett still has thousands of fans worldwide, including Brad Pitt, who has bought the rights to make a movie of it. Count me in as a Fawcett fan, too. Four stars.

Count Your Blessings… and Share Them

When you think you are going through tough times with hemophilia, I want you to think of some children I know. Born into poverty, suffering from hemophilia, these children usually have no access to factor, and endure horrific suffering. Some of these children are like Gorla. Gorla is ten-year-old boy from India with severe factor VIII deficiency. He is in the third grade and does miss school due to his disorder. He does not speak English. He has a 13-year-old brother, Yagna, who is also factor VIII deficient. His parents are agriculture laborers, who raise milk buffalos. The family income is only $2 a day.

Imagine trying to live on $2 a day. You can’t just pick up the phone and order factor when you are bleeding. You often cannot even go to the hospital for treatment; there is none. You simply endure it and suffer. Sometimes, you die.

We don’t want that to happen to Gorla. If you want, you can change his life. Save One Life is a nonprofit that provides individual sponsorships for boys like Gorla. In fact, Gorla himself is available to be sponsored!

I founded Save One Life six years ago. I sponsor 5 children with hemophilia personally, and see first-hand the difference it makes in their lives. We currently have almost 200 children in eight countries sponsored, but we have a long way to go. Would you like to help? Consider sponsoring a child in need, like Gorla. Just $20 a month could change his life, and enrich yours. Go to www.saveonelifeinc.org today, and share your blessings.

HemaBlog Archives