Sometimes the hardest thing is sticking with something to see it all the way through to the end. And even harder than that can be when you want to to see things all the way through to the end but aren't able to because of one thing or another.
I hope this has a happy ending. I'll never know.
________________________________________
From: Jen Kasten
Date: Aug 4, 2007 10:47 AM
Subject: Special need child in China
To: Allen Goldberg
Hi, Al--
I came across an announcement today about a little baby in China with special needs. From the baby's symptoms (heart murmur and extra thumb), I thought about Fanconi Anemia. I hope you will forgive my ignorance -- do these two symptoms often appear together in the absence of Fanconi Anemia? The U.S. agency that is trying to place her appears to be in Maryland (Silver Spring?). I was just wondering if you might have any ideas to help this baby:
Cradle of Hope Adoption Center is looking for a home for Xuezhou Ji. She is a 14 month old girl who was born with a heart murmur (Fallot tetrad) and two thumbs on her right hand. It is reported that she is happy, and laughs when she is around others. She enjoys being outdoors, dances to music, and is very attentive to her surroundings. She likes to take baths. Xuezhou is likely to need heart and hand surgery, but her prognosis is good.
We are thrilled to report that a generous donor will cover all agency fees associated with Xuezhou's adoption. Her new family will need to cover only homestudy, travel, translation, post-placement and other expenses totalling approximately $10,000 - 12,000.
For more information on this sweet little girl, please contact Amy Weiss at aweiss@cradlehope.org or at 301-587-3300, ext. 221.
Amy Weiss, LGSW
Adoption Social Worker
Cradle of Hope Adoption Center, Inc.
301-587-4400 x221
fax: 301-588-3091
________________________________________
From: Allen Goldberg
Date: Aug 4, 2007 7:34 PM
Subject: Re: Special need child in China
To: Jen Kasten
This sounds like it could possibly be Fanconi anemia. She will need to be tested. Let me do a number of things, including contacting the agency woman directly, see if there are FA resources or families in China, forward this to our doctor and whatever else makes sense. You may have saved this little girl's life.
Unbelievable.
You are awesome for putting this all together.
________________________________________
From: Allen Goldberg
Sent: Thursday, August 09, 2007 11:48 AM
To: Maryellen at fanconi.org
Subject: FA Resources in China?
Mary Ellen:
A friend forwarded this to me the other day.
Cradle of Hope Adoption Center is looking for a home for Xuezhou Ji. She is a 14 month old girl who was born with a heart murmur (Fallot tetrad) and two thumbs on her right hand. It is reported that she is happy, and laughs when she is around others. She enjoys being outdoors, dances to music, and is very attentive to her surroundings. She likes to take baths. Xuezhou is likely to need heart and hand surgery, but her prognosis is good.
We are thrilled to report that a generous donor will cover all agency fees associated with Xuezhou's adoption. Her new family will need to cover only homestudy, travel, translation, post-placement and other expenses totalling approximately $10,000 - 12,000.
For more information on this sweet little girl, please contact Amy Weiss at aweiss@cradlehope.org or at 301-587-3300, ext. 221.
Amy Weiss, LGSW
Adoption Social Worker
Cradle of Hope Adoption Center, Inc.
301-587-4400 x221
fax: 301-588-3091
Clearly, there is a remote possibility that the girl has FA. I spoke to the contact person, Amy Weiss, who said that the doctors there didn't think she had FA. I explained that the "standard of care" for FA --unfortunately -- is to miss the diagnosis.
I was trying to figure out if there are any FA diagnostic resources in China and saw on the FARF site that there had been a grant a few years back to Xie, Yan, MD, Hubei Medical University, Shijiazhuang, China, Toward a Diagnostic Service for Fanconi Anemia in Central China.
I know it is a vast country but my guess is that they'd be the best ones to do a DEB test for Xuezhou. Do you have contact info for Yan Xie that I can pass along to the adoption agency coordinator. If you think there is a better strategy to pursue let me know.
Thanks.
Allen
________________________________________
Van: Mary Ellen Eiler
Verzonden: dinsdag 21 augustus 2007 1:13
Aan: Allen Goldberg
CC: Joenje, H.
Onderwerp: Re: FA Resources in China?
Hi Allen,
The information that I have on China comes from Hans Joenje, PhD, Free University, Amsterdam. In brief, he and Quinten Waisfisz from his lab were invited to Wuhan University, China in 2005 to present on FA diagnostic methods.
This was the first-ever meeting on FA in Wuhan, and probably in China. The primary physicians there are Prof. Qun Hu, Department of Paediatrics, Tongji Hospital, Wuhan, and Fei Chen, Department of Hematology, Zhongnan Hospital of Wuhan University.
Yan Xie, to whom you referred, is a PhD researcher who studied with Hans in Amsterdam, but she is not a physician as far as I know. In any event, the physicians in Wuhan, prior to the meeting with Hans, were diagnosing FA based on physical characteristics alone. After the meeting, they planned to pursue chromosomal breakage diagnostic methods (using MMC), but I do not know if they have yet done that.
Unfortunately, I do not have the e-mails of these two physicians, but Hans probably does. I'll send a copy of this to Hans for his information in case he has additional information for you.
Please let me know if you need additional information.
Best wishes.
Mary Ellen
________________________________________
From: Joenje, H.
Sent: Tuesday, August 21, 2007 4:57 AM
To: Mary Ellen Eiler; Allen Goldberg
Cc: zhangkejian@medmail.com.cn; chenfeiwh@yahoo.com.cn; huixiaowh@yahoo.com.cn
Subject: RE: FA Resources in China?
Dear Mary Ellen and Allen,
Yan Xie meanwhile has settled down in the USA, as far as I know.
The best opportunity today for getting a Fanconi anemia diagnosis in China is to get in touch with the Department of Hematology, Wuhan University School of Medicine, 169 Donghu Road, Wuhan 430071, P.R. China.
Tel: +86-27 67813247; fax: +86 27 8730795.
People in the department who are familiar with the diagnosis of FA are:
Prof. Kejian Zhang (director), e-mail : zhangkejian@medmail.com.cn
Fei Chen, e-mail: chenfeiwh@yahoo.com.cn
Hui Xiao, e-mail: huixiaowh@yahoo.com.cn
I hope you will be successful in arranging for a chromosomal breakage test for Xuezhou.
Best regards,
Hans
H. Joenje Ph.D.
Dutch Cancer Society Professor of Oncogenetics
Department of Clinical Genetics
Vrije Universiteit Medical Center
Van der Boechorststraat 7
NL-1081 BT Amsterdam
Tel +31-20-4448270
Fax +31-20-4448285
Email joenje@vumc.nl
________________________________________
From: Allen Goldberg
Sent: Thursday, August 23, 2007 11:27 AM
To: ' aweiss@cradlehope.org'
Subject: FW: FA Resources in China?
Amy:
I cannot stress the urgency of having Xuezhou tested for Fanconi anemia (FA). The test is called a "DEB" test and below are contacts in China who you can contact about getting the test. There is no way her current doctors can know either way without having this test done. The failure of the blood components associated with this disease doesn't manifest itself until a bit later in life.
I speak from experience; like Xeuzhou Ji, my son Henry was also born with Tetralogy of fallot and a duplicate thumb. It wasn't until he was four years old that his marrow started to fail and he died at seven.
Can you please copy me when you forward the information below about FA testing in China to Xuezhou's doctors in China or her caregivers, and please reference me as a resource.
Thank you so much for what you are doing for Xuezhou. Hopefully she does not have FA, but if she does, acting now can save her life.
Regards,
Allen
________________________________________
From: Jen Kasten
Sent: Thursday, August 23, 2007 12:16 PM
To: Allen Goldberg
Subject: Re: FW: FA Resources in China?
Unbelievably complicated.
The way these special needs adoptions usually work is that an agency in the US gets 3 months to place a batch of kids, and if they're not placed, their names get sent back to the government of China to be sent to a new agency and the process starts over again. Seems unlikely this agency will get the tests done within their 3 month period. So then what happens? Her name gets sent back to China? The government there isn't going to care. Did Amy say anything about the next steps? Please keep me posted.
I also asked my agency about it. They suggested a US charitable organization called "Love Without Boundaries" that may be able to get involved...
________________________________________
From: Allen Goldberg
Sent: Thursday, August 23, 2007 11:36 AM
To: Medical at lovewithoutboundaries.com
Subject: FW: FW: FA Resources in China?
I am reaching out to you a little blindly, I must admit. It has come to my attention that a baby girl in China who is being put up for adoption may be at risk for a very serious genetic disease. There is a test to determine whether she has it or not, but the test is not widely available.
I have located researchers in China who may be able to do the testing. Meanwhile, the test is available in the United States and around the world at a number of centers, including Rockefeller University in New York. I have forwarded this information to the Adoption Coordinator, Amy Weiss (email below) who is providing it to the group’s executive director, who communicates with their coordinator in China.
My worry, expressed in my friend’s email below, is that Xuezhou Ji may not get tested. Given my distance and unfamiliarity with the systems in place, I don’t know the best way to ensure Xuezhou Ji receives the testing and unique care she may need. Is this something that Love without Boundaries can help see through? If not, can you steer me to any other resources that may help with Xuezhou Ji’s case.
Thanks.
Allen
________________________________________
From: Karen Maunu (LWB)
Sent: Thursday, August 23, 2007 4:07 PM
To: Allen Goldberg; aweiss@cradlehope.org
Subject: RE: FW: FA Resources in China?
Dear Allen and Amy,
I would be happy to call and arrange this test to be done. Can you please send me this child’s dob and what orphanage she is from? Does she already have a family?
Thank you!
Karen Maunu
Medical Director
Love Without Boundaries
"Every Child Counts"
www.lovewithoutboundaries.com
________________________________________
From: Allen Goldberg
Sent: Wednesday, August 29, 2007 11:24 AM
To: Linda
Subject: Special Needs Child in China - Xuezhou Ji
Linda:
I am sure that Amy has forwarded all of this information to you about Xuezhou Ji, who you were listing for adoption. I just want to make sure that you have been in contact with Karen Maunu from Love Without Borders, who compassionately offered to ensure Xuezhou Ji gets the proper testing and attention she requires given the possibility that she has a life threatening illness.
If you can copy me on your correspondence with Karen then I’ll know that the connections have been made. I have included my phone numbers below should you need to discuss any of this.
As you can see, there is urgency to finding out whether Xuezhou Ji has this disease or not. The hope that we all share is that she is free of Fanconi anemia; will have her Tetralogy of fallot and bifid thumb successfully repaired; and live a long and healthy life with parents who love her.
Thank you so much for your attention to this matter.
Regards,
Allen
________________________________________
From: Allen Goldberg
Sent: Wednesday, August 29, 2007 1:07 PM
To: maryellen; Lynn Frohnmayer
Subject: FARF and Keywords on Google
Mary Ellen & Lynn:
Mary Ellen, thank you again for your help with DEB testing in China. I was thinking further about that adoption notice that my friend saw posted online…
Cradle of Hope Adoption Center is looking for a home for Xuezhou Ji. She is a 14 month old girl who was born with a heart murmur (Fallot tetrad) and two thumbs on her right hand. It is reported that she is happy, and laughs when she is around others. She enjoys being outdoors, dances to music, and is very attentive to her surroundings. She likes to take baths. Xuezhou is likely to need heart and hand surgery, but her prognosis is good.
We are thrilled to report that a generous donor will cover all agency fees associated with Xuezhou's adoption. Her new family will need to cover only homestudy, travel, translation, post-placement and other expenses totalling approximately $10,000 - 12,000.
We all know that most people might not suspect a bigger, worse challenge like FA. The standard of care is to not diagnose, correct. So I asked a friend at Google what was the best way to bring the possibility of FA to the attention of people who are researching medical conditions or communicating about medical conditions online on their platform. I was interested in almost an “ad-like” solution that pops up or inserts a message if the context – search, GMail, etc. -- provides keyword triggers of FA-type anomalies (I know there is a large universe) and birth defects like “heart murmur,” “Tetralogy,” “bifid,” “no thumbs” and “extra digits” within a few words of each other.
He suggested these two Google resources as possible solutions:
http://www.google.com/grants/
free advertising from google for non-profits
http://www.google.com/coop/
annotate, supplement search results so that searches deliver more relevant, authoritative results. to see an example, search on "diabetes" and look at the trusted sources that have tagged content on the web.
I normally would just tackle this myself but am a bit swamped with work and other challenges right now. I don’t know if there is a FARF person, U of Oregon student or volunteer who might want to check this out at Google and other search engines, like Yahoo. In addition, it might be good to audit the FA references on top lay health and medical information sites, like WebMD. I know this seems to be really “in the weeds” but helping to change the standard of care through communication with medical professionals and possible patient populations must be one of the Research Fund’s goals. Hope this all makes sense.
Meanwhile, I am still trying to get Xuezhou Ji tested. The adoption agency has been less-than-cooperative. I have engaged an organization called, Love Without Boundaries http://www.lovewithoutboundaries.com/, and its medical director has compassionately agreed to navigate the orphanage and medical systems in China to make sure it happens. Hopefully, she will test negative.
Hope everyone is well out there. Please say “hi” to Dave. Thinking of you always and appreciative of everything you do.
Fondly,
Allen
________________________________________
From: Allen Goldberg
Sent: Thursday, September 06, 2007 11:08 AM
To: 'Linda'
Subject: Special Needs Baby in China
Linda:
Thank you for taking my call last week.
I appreciate all of the work you have done informing Xuezhou Ji’s physicians’ and prospective parents about the need to get her tested for Fanconi anemia. If the prospective parents fell through for any reason, I just wanted to let you know that there is a community of wonderful families with children who have Fanconi anemia who could be added to your prospect pool. These families intimately understand the challenges associated with having a child with FA. I am confident that there are a number who would be undeterred by the diagnosis. If you would like to get in touch with this group, please let me know.
Again, I hope that Xuezhou Ji tests negative and all of this is moot. But just in case, please know that there are parents who would welcome Xuezhou Ji into their families.
Regards,
Allen
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