Hemophilia in China

Let’s Bring Kyle Home!

There can be no image sadder to a mother perhaps than to think of a child left in an orphanage. When she tucks her own children into bed at night, giving them a kiss and turning out the lights, available all night long if her little one has a bad dream or is scared or lonely, she may think of another one like her son, alone, without a mother to call his own, to tend to his unique needs.

This is what haunted Danielle Stermer for months, especially wondering what living in an orphange must be like when a child has hemophilia. Her own son Max, only 18 months, who has hemophilia A, is doing well, but what about other boys in developing countries? Danielle lost her brother to hemophilia when he had a brain bleed 16 years ago, and thoughts of him and little boys overseas with hemophilia and no home or family truly haunted her. She knew she had to find a child and help him.

After a dedicated search she has found her little boy—Kyle, who has hemophilia A and lives in China. Danielle is desperate to bring him “home,” to America. She writes, “He was abandoned at 8 months old in a hospital in Shanghai, with a brain bleed due to a fall from a bed, and intramuscular bleed due to an injection, as well as respiratory infection and anemia. He has had many bleeds so far, including GI and shoulder bleeds. Every report I have read from the hospital shows him as malnourished and with respiratory infections.”

And perhaps most upsetting, “He is not allowed to go outside to play because of his hemophilia.”

For the past year, Danielle has filed paperwork, raised money, invested her life’s saving. She was recenty approved to adopt Kyle!

The only thing now preventing her from bringing him home is the cost. At a whopping $26,000, a foreign adoption is prohibitively expensive. Danielle expects to spend about $15,000 of her own money, and is seeking an additional $10,000 from the US hemophilia community.

Last fall we succeeded in raising $17,000 in only 48 hours when this community poured out its heart to bring “Luke”, also from China, home. He is now growing up in Michigan. In the past, we’ve helped bring a boy from Bulgaria and Vietnam to the US, all who have hemophilia.

Let’s do it again! Let’s bring Kyle home!

I will put in the first $250. Who will join us? How soon will we be able to bring this little guy to the land of milk and honey—and factor? We will be tracking the donations and seeing how quickly we can do this. If we all chip in, this shouldn’t take long at all. Think of what your contribution can do—completely change the life of a little one with hemophilia, in a land where factor is scarce to nonexistent, and where there are no parents to love him each day, or tuck him in each night. He is four years old—there is not a minute to lose!

To donate: Please mail a check directly to
Wasatch Adoptions
11430 36th street, #204
Ogden UT 84403

Put “Stermer/Kyle adoption” in the memo field. Wasatch Adoptions is a non-profit 501(c)3, and will immediately send you a receipt and letter for tax-deduction purposes, and will notify Danielle so she can thank you!

You can also go to

Please visit Watsatch Agency at http://www.wiaa.org/ if you have any questions about the adoption. And visit Danielle’s blog at http://www.kyleshope.blogspot.com/

Everyday Heroes: The Luckeys Adopt Lu Feng

In a heartbreaking week, watching the aftermath of the earthquake in Haiti, at least we have some good news: Lu Feng, a Chinese orphan with hemophilia, will be coming to his new home in America. And so many of you helped bring him here!

We learned about Lu Feng through an adoption agency and decided to send an email to our readers. Within one week a family had stepped forward and was approved! The Luckey family of Michigan includes Jay, who has hemophilia and an inhibitor. They invested $10,000 of their own money, but fell short of the up to $25,000 needed to adopt. We offered to help and reached out to everyone on our email list. Within 48 hours we had raised $17,000!

Shari and Dave are in China right now, preparing to bring Lu Feng home. What a lucky child indeed!

Shari writes:

“Laurie, we want to thank you and the hemophilia community so much for helping us to realize this wonderful opportunity to enrich the life of our new son, while he enriches our lives and completes our family. We are so anxious to finally meet him. We know things will not be easy for a while, but we have faith, that this is what God has planned for our family and with His help, we will get through the hard times and come out even stronger on the other side. Lu Feng comes home February 7!

“Thank you again…this wouldn’t be happening, without the part you all played in the plan!”

I just read Shari’s blog about the trip, and today she went shopping for a backpack and some clothes for Lu Feng. Tomorrow she gets to meet him for the first time!

Shari and Dave, like so many who adopt, are true heroes to me. Thanks for giving us such joyous news during such a sad week internationally. I’ll write next week about how the meeting with Lu Feng went!

The bond that links your true family is not one of blood, but of respect and joy in each other’s life. – Richard Bach

Great Book I Just Read
The Children’s Blizzard by David Laskin
On January 12, 1888 a horrific blizzard hit the Midwest that slashed temperatures 40 degrees within minutes. Caught in the blizzard, with lashing winds and temperatures about 40 below, were scores of children who were attending school. Without realizing the plummeting temperatures, most teachers sent the children home, and most never made it. This mesmerizing and heartbreaking tale delves into the reasons why so many pioneers ventured to the harsh prairies of the west, especially the Mennonites and Nordic immigrants, how they suffered so many losses simply trying to farm and raise children. Life was already especially difficult, and then came the blizzard. Laskin analyzes the US Signal Corp and what role they played in not being able to predict the sudden drop, and allows us to get to know many of the families personally. This makes it all the harder to read it to the end. How some of the children survived, and how they risked their lives to protect siblings and friends is amazing. Three stars.

China Repeats Our Nightmare

A heart-breaking story comes out of China, one that too many in our own US community can relate to: trying to wrest compensation for HIV and hepatits C infection from tainted blood products. The news wires are reporting that the Heilongjiang Province family of Wang Lei filed a lawsuit over the infected factor VIII in June 2003 at Changning district court in Shanghai. It appears that big city families are already getting compensation; Shanghai-based hemophiliacs each had their medical expenses reimbursed. But families from rural areas and distant provinces are getting no help.

The Chinese courts claim that the plaintiff failed to provide sufficient evidence and an HIV virus infection might have come through any one of multiple channels, according to Wang Lei, the father of the boy. The courts are telling them to find compensation elsewhere.

We all know that trying to get anything done in a Communist regime is a nightmare of bureaucracy. “After further court failures in his home city of Harbin, capital of Heilongjiang,” the papers report, “Wang and his peers have trudged thousands of miles down the many and various hopeless petitioning bureau lines of China. One out of every 500 petitioners, or 0.2 percent, have their problem actually solved, according to Yu Jianrong, a researcher at the Chinese Academy of Social Sciences, in his 2004 report The Deficiency of Petition System and its Political Consequences.”

Eight years of struggle with the Shanghai Institute of Biological Products and its parent pharmaceutical company of Sinopharm has not paid off. By contrast, Hong Kong-listed Sinopharm – the China National Pharmaceutical Group Corporation – reportedly earned over 700 million dollars in 2008. Its revenue in 2007 reached 35 billion yuan.”

And recently, on December 30, the news really hit the wires when the family and other families with hemophilia petitioned in front of the Beijing headquarters of Sinopharm for a compensation package for the 15-year-old blood contamination scandal.

They’re asking for about $146 as living expenses and also hotel fees from a month’s petitioning in Beijing, plus six vials of factor VIII. Six vials. For all their troubles!

After three rounds of negotiations, Sinopharm agreed to offer each patient $1170 “consolation money” and paid their Beijing hotel bills. “The petitioners were reminded that the company will make no more payments and accept no more petitions,” one story reported.

Sinopharm’s corporate slogan? “Care about life. Care for health.”

The father, Wang Lei, has paid for his son’s treatments by borrowing from relatives. Compounding their problems: he and his wife were laid off in 1997. They are running out of treatment options.

China has about 130,000 people with hemophilia, and about 1,000-2,000 are HIV-positive. Two bright notes: China now has a dynamic patient-based group called Hemophilia Home of China, which can help families like Wang Lei, and Asia Catalyst, a non-governmental organization based in New York, has raised some suggestions for China’s population with hemophilia and HIV to help keep the good fight going. It’s a fight well known to some hemophilia veterans here, who have known the rejection, isolation and hopelessness, but who eventually prevailed, at least in the courts. Let’s hope China achieves that one day soon.

From “Wrong blood, wrong place, wrong time,” Global Times [22:42 January 07 2010] By Yin Hang

Great Book I Just Read
The Long Walk by Slavomir Rawicz
This incredible story of survival recounts the remarkable true tale of a 24-year-old Polish soldier who is captured by the Russians, held for 18 months in brutal, subhuman conditions while being interrogated, and eventually set on a 1,000 mile journey to prison in Siberia. The scenes of camping in a subzero degree frozen wasteland in nothing more than shirts and pants defy the imagination. He has to walk, while chained by the hand to a truck, for miles and miles until they reach the prison. He never once gives up on escape, though he is surrounded by the brutal winter of Siberia. But he does it, with six other men, and they walk literally thousands of miles, even through the Gobi desert, to reach British-held India. Incredible story of survival, told without a hint of “why me” or injustice or bitterness. Must read! Four stars.

Adoption Thanks to All!

I attended a neighbor’s party this afternoon, to celebrate their son’s Christian confirmation. While there, I chatted with other neighbors of ours, who I heard adopted a seven-year-old from Poland in June. I’ve been so busy this summer I had yet to meet him. And then, there he was…. beautiful child, happily playing with the neighborhood kids. His parents in Poland were alcoholics, and he was placed in the orphanage at age 5 with his siblings. There was evidence of abuse. And here he was, running on the lawn in the sunshine, healthy, eating cake and having a Sprite. What a lucky boy… which made me think of the Luckeys of Michigan, who we helped just two weeks ago with our fundraising email blast. Within 36 hours we exceeded the $10,000 goal, and eventually raised $17,000, to help them bring Lu Feng, an eight-year-old orphan with hemophilia, to his new home here in the US. And when I returned home, I had a message from Shari Luckey, asking me to share her letter this week with everyone reading the blog:

“This community, which we have been blessed to be a part of, has amazed us with their quick response to help our family bring Lu Feng home. We were so appreciative to you when we began this journey for your support and encouragement of our decision as a family to bring Lu Feng into our home as a son and brother to our three other children. From your initial email telling about this eight-year-old boy in China, your efforts to get factor to him and your pledge to get the word out to the hemophilia community that our family needed financial help to make this dream come true, you have never wavered from your commitment to our little boy in China. For that we will be forever grateful.

“When we began the fundraiser and the first donations began pouring in, we sat at the computer with tears of relief rolling down our faces. We never imagined that in less than three days, we would have not only met our goal, but surpassed it by more than 50%. With the funds that have been raised, we will be able to pay all of our remaining fees for the adoption, purchase our airfare, and have enough left to cover the majority of our living expenses (hotel, food and travel) while in China. Thank you does not seem sufficient to express our feelings of appreciation for those who donated and made this a reality.

“Currently it has been 63 days since China logged in our adoption paperwork as received. Typically it takes them around 90 days to process this paperwork, give or take several weeks. Once we receive the official travel approval from China we have a little more paperwork here in the states and then we arrange our travel and plan our trip. We are unsure at this point if we will be traveling in 2009 or at the beginning of 2010. We will keep you posted as the journey unfolds. We are busy at home preparing for Lu Feng’s arrival. Bedrooms have been reassigned and redecoration efforts are underway. Two weeks ago, we purchased a bedroom set for Lu Feng with bed, armoire, desk and chair. We are excited for him to see his new home and his very own room!

“When Lu Feng is able to understand, we will tell him how cared for and loved he was from the very beginning of his life. Loved by his birth parents who had the courage when he was only a year old to leave him at the one place they knew could help him, the hospital; cared for by the Chinese doctors that gave him the best treatments they could with the resources available to them; cared for and loved by the caregivers at the orphanage on a daily basis; cared for by the hemophilia community around the world, who united to get him medication and help bring him to the United States; and finally loved by his forever family in Michigan, before we ever even met him. He has a mother, father, big brother and two big sisters, three grandparents, aunts, uncles and nine cousins waiting for him here in Michigan to love and support him from the day he arrives home and forever.

Again we thank you all for your support and will keep you updated as we move forward.”

Gratefully yours,
Dave, Shari and the (now) 4 Luckey Children

We look forward to hearing about the Luckey’s adventure in China, and the homecoming trip, and to one day meeting Lu Feng, a very special little boy.

A “Luckey” Boy

Imagine your little boy with hemophilia abandoned, left in an orphanage, with no factor. It seems impossible, inhuman. You can only imagine the depths of despair or fear that cause parents to abandon their child.

Lu Feng, age 8, was abandoned when his parents learned he had hemophilia. In China, families are permitted only one child. This doesn’t stop parents from abandoning one if it is not desirable. Girls get abandoned, and so do physically defective children, especially when there is no treatment for him. Lu Feng has been in an orphanage most of his young life.

We were contacted by the adoption agency: would anyone in the hemophilia community be interested? We sent out an email in March, and within one week we had serious replies. Eventually, one family was selected … the Luckeys of Michigan. Their son Jay has hemophilia and an inhibitor. I met Dave and Shari a few years ago at a consumer meeting. Nice people: intelligent, warm, educated and informed.

I was thrilled to hear they had been selected! But big barriers remained. Step 1, we had to get factor to Lu Feng, to keep him healthy until he made it “home,” to America. That was easily done. We have excellent contacts in China from our humanitarian work there. Delin Kong, person with hemophilia and one of the founders of the Hemophilia Home of China, immediately got in touch with the orphanages and doctors, and we had the shipment approved.

Step 2: raise money. The Luckeys used every bit of their life savings, $13,000, to put towards the adoption. But the expenses required at least $10,000 more dollars, a fortune for them. The adoption agency created an Active.com page, and we offered to alert the entire community from our database, over 3,000 US families with hemophilia. Within five minutes we had money coming in. Within hours, thousands. Within 30 hours, we had raised over $15,000.

Clearly, there is something about saving the life of one child that is compelling. And the US hemophilia community cares deeply about children with hemophilia in developing countries.

Lu Feng has a family, at long last. His new brother and sisters are waiting to meet him in Michigan. The Luckeys were overwhelmed by the outpouring they experienced. Dave says, “I can truly say that I am humbled by the generosity. We had been worried about how we would finance the remainder and were going to have to use our home equity line of credit. Obviously that was making us fairly nervous. I wish I had words to express our gratitude but I can honestly say there are none that would justly convey the emotion.”

Thanks to everyone who donated! You have helped to completely change the life of one little boy, who, left parentless in China, faced certain early death. He now has a shot at life, and in America! But above all, thanks to Dave and Shari for opening their hearts and home and lives to welcome Lu Feng.

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