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Diamonds in the Slums

Laurie Kelley July 6, 2009

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.

Hatching Butterflies: Metamorphosis

Laurie Kelley July 2, 2009

I woke up Sunday morning at 6 am, after being serenaded by roosters all night long, who echoed their cries into the lush rolling hills outside Santo Domingo, the capital of Dominican Republic. Morning in the DR is lovely, with mist clinging to the trees, and the sun just started to bake the ground. After a chilly shower, I left my sleeping roommates (including my 15-year-old daughter Mary) to join about 50 boys with hemophilia to do morning exercises with “Cuchito,” their coach. If only we could wake up this way every morning of our lives!

After fun exercises and stretching, to get the boys’ joints limber, we marched– and I mean, marched–off to breakfast, always a healthy and hearty meal. The boys then prepared to leave their their DisneyWorld, their adventure land, their annual mecca. Packing, laughing, hugging–the Dominicans are known for their great affection towards each other–the boys reluctantly made their way to the bus and back to Santo Domingo.

But what a time we had! On Friday the boys were treated to a surprise: a visit from Marcos Diaz, world class long distance swimmer. Marcos gave a spellbinding speech poolside about discipline, perseverance and setting goals. He isn’t just a swimmer: he was born with severe asthma, and was not expected to ever do much in life. He didn’t let his asthma stop him, and set out to conquer it through swimming. We took many photos, and I think the adults were as excited to meet this national hero as the children.

We had carnival, arts and crafts and then, the Talent Show!! It was wonderful: full of music and dance, and unexpected but hilarious skits from the teens as they mimicked the adults–including the founder Haydee de Garcia, and me!

Camp “Yo sí peudo” has ended and was a magnificent, fun time for all. If you look at the logo on Ronnie’s yellow shirt, you’ll see the camp theme for this year: metamorphosis. It’s our tenth anniversary, and we’ve watched little children grow to men, from caterpillars to butterflies, ready to spread their wings. Knowing they have hemophilia, some disabilities, and even poverty, nothing could be greater than the smiles on their faces, and the hope in their hearts.

Please view our gallery of camp here.

Hot Fun in the Summertime

Laurie Kelley June 29, 2009

What could be more fun than attending a camp with 50 boys with hemophilia in the summer heat with activities, great food, camaraderie, a talent show, carnival games, swimming pool and meeting a world class celebrity?

Doing it in the Dominican Republic, a tropical paradise.

It’s the 10th anniversary of a remarkable camp, “Yo si pudeo!—Camp “Yes, I Can!” I would dub this one of the best, if not the best, camps for hemophilia in the developing world. And I know what it has taken to make it so as I was here for the very first camp in 1999.

Back then, as I told the staff today, I came to the DR give direction and advice. Things like: you need volunteers. You need to raise money. You need to quarter the medical area, preferably out of the dorms. You need Plan B for when it pours rain for three solid days. You need name tags, a list of each camper, and above all, you need factor. And factor can’t be stored with the raw meat.

It was a long learning process, but with each camp, the experience got better and better. I was delighted in 2005 to attend my fourth camp and saw not only a medical room, but also one under lock and key, clean and organized, with fresh flowers in a vase. Not only did the kids have nametags, but they had groups, which were named, and each group assigned a teen counselor. The counselors were the teens who grew up in camp. Amazing!

Ten years of camp came together seamlessly to create an awe-inspiring four days. The children were dropped off by family members on Thursday at the Robert Reid Memorial Hospital in Santo Domingo, the capital. I eagerly greeted the children I had come over 10 years to know and love, and met some new ones. Once assembled, they were hustled off to a chartered bus for the quick 25 minute ride to Lomas Linda, a lovely, lush town nestle in the hills. This was an exceptional venue—a private function house, with a huge wrap-around veranda on which were oversized chairs and hammocks, enticing visitors to relax. Parrots in cages, a pool table, gorgeous tropical flowers, I felt like I was back in colonial times, at a governor’s house in some far reaches of the world. Except, of course, for 50 Dominican kids with hemophilia having the time of their lives.

All the children were assigned to a group, distinguished by a color, and had color bands around their wrists so there was never a doubt which group they belonged to. And each child had a nametag, so that we could all learn one another’s names.

See all the photos of camp here!

https://lakelley.smugmug.com/InternationalTravel/Humanitarian/Dominican-Republic-Camp-2009/

The day begins at 7 am sharp with stretching on the lawn, headed by “Cuchito,” the coach and motivational man who showers the boys with love and discipline, and lots of fun. “Consado? (Tired?)” he shouts; “No!” the boys yell back while marching. “Alegre? (Happy?)” he shouts; “Si! (Yes!)” they reply. For 30 minutes they march, stretch, jump and loosen up, then eat a healthful breakfast. After that, there is pool, arts and crafts, rap sessions, educational seminars or rest times. The older boys look after the younger; and everyone is expected to participate, pitch in, and be the best teammate possible. It’s a successful recipe: the kids are attentive, behaved, active and happy.

One big surprise came when the kids were assembled outside the compound, eventually allowed back in through a series of “obstacles” as a group, with each obstacle an educational game about hemophilia at a table, staffed by maybe Dr. Rosa, their pediatric hematologist, or Dr. Joanne, the adult hematologist. When they passed through all the obstacles, they entered the main lawn of the compound, where there was a carnival! The center of attention was a huge, inflated slide which could and did hold up to 20 boys at one time, sliding, diving through tubes, climbing over inflated bars and then emerging at the end through two holes. No one seemed to notice when the clouds opened up and poured rain on everyone for about 20 minutes. Everyone beamed sunshine from within.

Many of the boys suffer permanent joint damage, and though young, walk with disfigured ankles, knees, and hips. I see Gabriel, who has a dazzling smile, trying to keep up with his friends by hopping-running-hopping-skipping-running to accommodate his crooked legs. He cannot be more than 15. Others have bleeds, and need to be reminded to stop playing and visit the medical ward. Though factor is a luxury here, being together with their hemophilic brothers is an even greater luxury, and one they don’t want to miss.

Today we came back to Santo Domingo, with stronger bonds and happier children. I hope to write more about the experience because so many wonderful things happened, and because it was our tenth anniversary.

I ended the day telling the staff that I used to come to the DR to give them advice on how to run the camp. Now I come to learn from them how to run a camp, and how to raise children with hemophilia when there are few luxuries, little medicine and no resources. Well, not no resources; the DR is rich in human resources, where creativity, hard work and dedication is changing the lives of so many children.

Check in again soon to read more and see the kids with their celebrity hero….

Do Not Pass Go; Do Not Collect $3.1 Billion

Laurie Kelley June 22, 2009

The game of “Monopoly” is over– at least that’s what the Federal Trade Commission would have called it. Worried that CSL Behring would become too big after acquiring Talecris, and concerned that there was some antitrust issues, the FTC slapped the wrists of these two billion dollar plus companies and announced it would oppose the merger through the US courts, if necessary. Talecris management decided to withdraw from the $3.1 billion takeover deal by CSL Behring.

The US FTC opposed the proposed merger by alleging that the US plasma market was a tightly-controlled oligopoly, and that the merger would violate antitrust laws. CSL Behring has rejected these claims. The merger would have left CSL Behring the biggest plasma manufacturer in the world.

I read that CSL, Talecris and market leader Baxter International of Illinois have 83% of the US market for blood-based drugs; hemophilia plasma-derived products are included in this.

Just a little history: Talecris is the company formed in 2005 when Bayer spun off its plasma division. Bayer produced a plasma-derived factor VIII product called Koate DVI. Talecris inherited it and still produces it. It’s a big company, with 2008 sales of over $1.4 billion. It’s not big in hemophilia in the US, but it is a major player in the immune deficit disorders community.

The proposed sale to CSL Behring is no surprise. I’ve heard from the get-go that management at Talecris would expand the company, and then sell it and reap the profits. Private equity companies Cerberus Capital Management and Ampersand Ventures together bought the plasma division of Bayer for more than $300 million. And now it’s up for $3.1 billion.

So what happens now?

Well, we still have seven licensed manufacturers of factor on the US: Baxter, Bayer, CSL Behring, Grifols, Novo Nordisk, Wyeth and of course, Talecris. I wouldn’t be surprised if more mergers are proposed down the road but the FTC ruling might make it impossible to accomplish. Our community, our industry, is small and carefully watched. And the Obama climate seems to be very antitust-conscious.

Neal R. Stoll and Shepard Goldfein, in the New York Law Journal (November 19, 2008) note, “In his September 2007 statement to the American Antitrust Institute (AAI), President-elect Obama noted that ‘[a]ntitrust is the American way to make capitalism work for consumers.’ President-elect Obama emphasized that, ‘the [Bush] administration has what may be the weakest record of antitrust enforcement of any administration in the last half century,’ and he specifically cited lax merger enforcement for the rising cost of health insurance.” The authors then go on to say that antitrust laws are not good tools to effect economic engineering.

Read more about plasma derived products–their role in hemophilia history and today, in the next issue of PEN.

Suffer the Little Children

Laurie Kelley June 15, 2009

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.
http://www.fosters.com/apps/pbcs.dll/article?AID=/20090611/GJNEWS_01/706119760/-1/FOSNEWS

“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.