This half Thai / English needs desperate help - please - share and tell people about this

[Showbags]

Us having beautiful children is irrelevant....they are not eligible until 18yo and can make the decision then themselves....even if the age allowed was younger...I doubt I would let my child go through it unless he/she was old enough to decide for themself, especially if general anesthetic was required which is a risk in itself.

I am going to go and link to her site on FB....also not a fan of the <deleted> site, but shall happily do it to share with you never know who.

[Showbags]

Out of interest and sorry if mentioned already...but why is a half thai half foreign offspring required as best possible option ?

And does the foreign parents country of origin matter ? If so, why ?

[HeijoshinCool]

Us having beautiful children is irrelevant....they are not eligible until 18yo and can make the decision then themselves....even if the age allowed was younger...I doubt I would let my child go through it unless he/she was old enough to decide for themself, especially if general anesthetic was required which is a risk in itself.

I am going to go and link to her site on FB....also not a fan of the <deleted> site, but shall happily do it to share with you never know who.

The reference to the children of TV members was not a solicitation for donors of their children, who must be of legal age, rather a reminder of how lucky, or depending on one's beliefs, blessed, they are to have children who are healthy, and to bring about an empathy for the heartaches and fear of Tia's parents who, without a donor, will lose their child to certain death.

Tia's mom and dad have been asked to sign an agreement to do extensive testing on their only baby. Testing that is not intended to help Tia, but those after her death, if no donor volunteers. Imagine being a parent and signing those papers, knowing your two year old child will experience pain and fear she can not understand, to save another's yet to be born child.

That's sacrifice.

Thanks for checking out her FB page. Share it, and like you said, you never know ….

[HeijoshinCool]

Out of interest and sorry if mentioned already...but why is a half thai half foreign offspring required as best possible option ?

And does the foreign parents country of origin matter ? If so, why ?

Children of mixed heritage have an approximately 40% chance of finding a match.

Those who are not of mixed heritage, 90%.

The fact that her mother is Thai, and father, English, is of importance scientifically. Donors of similar heritage to Tia, are far more likely to be compatible.

The odds for Tia finding a donor are reported as 1 in 17 million.

Tia needs to win the lottery.

But as you'll see on her FB page, a little girl named Margot, who is mixed heritage, won the lottery last month. The more tickets (people tested for compatibility) you and I can buy (find) for Tia, the better chance she has to win.

[Blackandwhite]

HeijoshinCool

Thanks for your help again in answering the questions people post here

To everyone else - I hope to meet with Tia's family sometime soon to ask all your questions - I also have a contact that is running through the options of producing a video that we can post to help raise awareness regards this

Please please do what you can to support - even if it is just a like on facebook - they feel the support and if support helps then that is one good thing done for that day

If you have questions or idea please post here or say hello on the FB page

[samran]

Out of interest and sorry if mentioned already...but why is a half thai half foreign offspring required as best possible option ?

And does the foreign parents country of origin matter ? If so, why ?

It is partly a genetics thing as had been explained. The matches can be slightly off, but this brings up other risks. As opposed to an organ transplant where the body attacks the new transplanted organ, with a BMT the new marrow can attack the new body, hence the need for a close as match as possible. But there still needs to be some mongrel in the new marrow to kill off the old defective marrow as prior to the transplant the child will be given super strong chemo to kill off the old marrow. Ideally the chemo will but there may be some old marrow left over which the new marrow will need to kill off naturally.

It is a fine balancing act which doesn't always work, as the old marrow can fight back and kill off the new one even after the transplant.

The flip side is that too low a match and the new marrow attacks not just the old marrow, but other organs including skin.

Add to this the lack if immunity post transplant means infection risk for a long time.

So in short, the better the match the better all these issues can be balanced.

[cdnvic]

Beautiful little girl. Hope they find a match soon.

[ppmacready]

Also just to be clear - I have no reason to be involved with Tia or her family other than hearing of her on the news and Facebook - I simply want to help them spread the news and see if there is anyway I / we can help. I am hoping to meet the family soon to get a better understanding of how we can help and the type of support they need.

Thank you all for your help please keep it coming

Anyone have a contact that can find out how much 5000 a3 flyers might cost to print ??

Email them to me and I'll get them printed.

Where do you want them sent?

I belong to Rotary Eastern Seaboard.

I would be happy to share the cost with you.

Send me a PM.

Edited February 27, 2014 by Mario2008
email removed

[slipperylobster]

It would help if a qualification list (history of illness, hepatitis, other screening data) would be posted...or a link thereof to.

[HeijoshinCool]

Also just to be clear - I have no reason to be involved with Tia or her family other than hearing of her on the news and Facebook - I simply want to help them spread the news and see if there is anyway I / we can help. I am hoping to meet the family soon to get a better understanding of how we can help and the type of support they need.

Thank you all for your help please keep it coming

Anyone have a contact that can find out how much 5000 a3 flyers might cost to print ??

Email them to me and I'll get them printed.

Where do you want them sent?

I belong to Rotary Eastern Seaboard.

I would be happy to share the cost with you.

My email is

Thanks kindly.

I'm also working on designing a layout that hopefully I can post on TV, so that members can print out as many copies as they like.

Hopefully they will take them with them wherever they go, handing them out, or posting them in public venues.

Do you know of anyone that is good with graphic layouts? The more professional the flyer/poster, the better the response.

Edited February 27, 2014 by HeijoshinCool

[HeijoshinCool]

It would help if a qualification list (history of illness, hepatitis, other screening data) would be posted...or a link thereof to.

Here's a link that has lots of info:

https://www.bmdw.org/index.php?id=97

And here is a page from that website, listing the locations around the world where one can be tested for compatibility, and donate.

https://www.bmdw.org/index.php?id=addresses_members&no_cache=1

[Dukeleto]

How terribly sad, I hope they can find suitable help. Poor little thing...brings tears to my eyes. Thanks to the gent who posted this.

[evadgib]

The OP may like to look at this:

http://www.youcaring.com

A similar case posted via this link had exceeded it's target within 2 months.

HTH

Edited February 27, 2014 by evadgib

[northernjohn]

Here is the information in Thai - I think I did not write it !

See this page Tia Pugh immune deficiency.

วันนี้พาน้องไปเปิดตัวของบริษัท แอนโนแลนด์ที่จัดขึ้นเพื่อให้คนมาบริจากสเต็มเซลให้กับน้องเทียและเด็กคนอื่นๆที่ต้องการความช่วยเรื่องสเต็มเซลและก้อลุร่วงไปด้วยดีแต่ยังต้องการให้คนเข้ามาร่วมบริจากสเต็มมากขึ้นเรื่อยๆ แม่และน้องเทียจะไม่ยอมแพ้จะสู้ต่อไปเพื่อที่จะค้นหาสเต็มเซลให้น้องจนเจอ. สู้ๆๆค่ะ. เราจะงานขึ้นมาอีกครั้งจะเป็นวานสำหรับครอบครัวและเด็กๆเรียกว่าฟันเดย์รายละเอียดจะลงบอกอีกที่ค่ะ และต้องขอขอบคุณพี่เหมียวRungnapha Romruenและครอบครัวที่มาเป็นกำลังใจให้น้องเทียและก้อพี่หนึ่งกับแฟนและพี่นงค์kamonporn sukphromด้วยค่ะ และก้อขอขอบคุณพี่ๆน้องๆที่เข้ามากดไลและคอมเม้นเป็นกำลังให้น้องเทียและแม่เสมอมา ขอบคุณจากใจอีกครั้งจากครอบครัวPugh )

Hope it is right. I will have the wife's daughter post it at the Hospital where she works. I hope it has a contact point in it.

[samran]

As a parent I can think of a heck of nasty occurrences, and if it was a "Farang" kid, no Thai would even bother.

If you have nothing positive to say to help a child, then please don't post misleading statements that might cause others to not consider helping.

Tia's doctors are not looking for "Thais" to be tested. They are looking for the adult offspring of one SE Asian parent, and one western parent.

Ignorance, suppression!

Well, if there is nothing positive in a write-up, for "YOU", then don't read it!

go pick a fight elsewhere

Your post was ignorant at best, c**tish at worse, especially given the topic matter. I tend to believe the latter.

[NHT]

As a parent I can think of a heck of nasty occurrences, and if it was a "Farang" kid, no Thai would even bother.

If you have nothing positive to say to help a child, then please don't post misleading statements that might cause others to not consider helping.

Tia's doctors are not looking for "Thais" to be tested. They are looking for the adult offspring of one SE Asian parent, and one western parent.

Ignorance, suppression!

Well, if there is nothing positive in a write-up, for "YOU", then don't read it!

go pick a fight elsewhere

Your post was ignorant at best, c**tish at worse, especially given the topic matter. I tend to believe the latter.

Who is fighting?

I made a statement. Then, some "smart" people started picking. A lot for losers can only accept what fits their collar. Did you read the end of my statement, or didn't you make it that far? Now go, pick again. You need that!

[flyingdoc]

I cannot help directly on the bone marrow issue, but as far as raising Tia's immune system, the most effective thing around is Beta Glucan in doses of up to 2 gm per day. There are no adverse side effects, and I would willingly donate some of our product if that could help?

[HeijoshinCool]

Just a note to clear up misinformation that an earlier poster attempted to propagate:

I have seen nothing from Tia's parents, or others, seeking financial donations.

As far as I'm aware, the only "donations" they seek are blood, for the numerous transfusions Tia must endure, and marrow, to save her life.

[WitawatWatawit]

The Red Cross Society in Henri Dunant Rd - isn't that very close to the protests?

Is there any other way of registering and finding out if you are compatible? (I'm thinking of asking my daughter to register, but I would not like her to go near the protest sites.)

[HeijoshinCool]

The Red Cross Society in Henri Dunant Rd - isn't that very close to the protests?

Is there any other way of registering and finding out if you are compatible? (I'm thinking of asking my daughter to register, but I would not like her to go near the protest sites.)

Give them a call and ask.

In Thailand it's done with a simple, quick blood draw. Perhaps this could be done at another location, hospital or doctor's office, and sent there?

Contact us

Stem Cell Donor Registries and Cord Blood Banks

Thai National Stem Cell Donor Registry (TSCDR) and Thai National Cord Blood Bank Match codes: Thailand [TH] / Thailand-Bangkok CORD [bACB] National Blood Centre, Thai Red Cross Society

1871, 3rd Floor, Chalermprakiatbaromrachineenart

Henri-Dunant Road, Pathumwan

10330 Bangkok

Thailand TEL: +662-255-4213

TEL: +662-263-9600 ext 1301

FAX: +662-255-5558 Details Email: [email protected]

Website: http://www.stemcellthairedcross.com/

Edited February 27, 2014 by HeijoshinCool

[Malthus101]

I understand Brits of a certain age can't give blood. I assume it's the same with bone marrow.

I got it but if they don't want it.... what can I do.

[HeijoshinCool]

I understand Brits of a certain age can't give blood. I assume it's the same with bone marrow.

I got it but if they don't want it.... what can I do.

You mean because of BSE?

Doesn't appear that to be the case, looking at this link:

https://www.bmdw.org/index.php?id=97

or this one:

https://www.deletebloodcancer.org.uk/become-a-donor/basic-information.html

[kennypowers]

I have shared this on Facebook and will do what I can to spread the word. Thank you for starting the awareness campaign here. I pray a match will be found soon.

[outre99]

I like Peter Singer's way of discussing the ethics of helping others.

If you were wearing your very best clothes and shoes and you saw a child drowning in shallow water, what would you do ?

Go in and get him/her , What Else ?

But you might ruin your clothes and shoes.

Only a few thousand dollars, no big deal, compared to a child's life.

You can save a child's life in some countries by donating a few thousand dollars.

Ah,,but......

..........................................................................................................................................................................................

Some will reply and rightly say how much is siphoned of by charities and other reasons for not going that route. But closer to home ?

The ethics of charity are always complicated by considerations of viability and opportunity cost. Emotionally I feel sorrow and compession for this little girl and her parents. Intellectually i can't help but wonder if the resources, which are finite, that would be required to cure not one but 2 "incurable" conditions that are aflicting this poor girl might not be better spent on treating several children with less serious conditions.

I used to be an EMT (Emergency Medical Technician) working on an ambulance part time. Both on an ambulance and in the hospital emergency room the method of medical triage is the accepted practice of determining the most efficient allocation of medical resources between several patients. As heatbreaking as it is sometimes the circumstances force us to make painful decisions in order to help the most number of patients with the time and resources we have.

This is applicable not only to individual cases but to national and even international aid initiatives. This is not an attempt to trol nor the provocation for a flame war but an invitation to a thoughtful discussion.

[damohowarth]

I am 26 years old and am happy to help in any way..

My computer is terrible at loading up TVF pages but if someone could email me @ [email protected] with some information on how to help I most certainly will...

[HeijoshinCool]

I like Peter Singer's way of discussing the ethics of helping others.

If you were wearing your very best clothes and shoes and you saw a child drowning in shallow water, what would you do ?

Go in and get him/her , What Else ?

But you might ruin your clothes and shoes.

Only a few thousand dollars, no big deal, compared to a child's life.

You can save a child's life in some countries by donating a few thousand dollars.

Ah,,but......

..........................................................................................................................................................................................

Some will reply and rightly say how much is siphoned of by charities and other reasons for not going that route. But closer to home ?

The ethics of charity are always complicated by considerations of viability and opportunity cost. Emotionally I feel sorrow and compession for this little girl and her parents. Intellectually i can't help but wonder if the resources, which are finite, that would be required to cure not one but 2 "incurable" conditions that are aflicting this poor girl might not be better spent on treating several children with less serious conditions.

I used to be an EMT (Emergency Medical Technician) working on an ambulance part time. Both on an ambulance and in the hospital emergency room the method of medical triage is the accepted practice of determining the most efficient allocation of medical resources between several patients. As heatbreaking as it is sometimes the circumstances force us to make painful decisions in order to help the most number of patients with the time and resources we have.

This is applicable not only to individual cases but to national and even international aid initiatives. This is not an attempt to trol nor the provocation for a flame war but an invitation to a thoughtful discussion.

"Triage" is a method of prioritizing in emergency scenarios, where time and resources are severly limited, and is a sad but understandable practice. I did it both as a cop, and as a paramedic, and children died in the course of it.

But certainly if time and resources are abundant, there is no "selecting" of survivors. All the ill and injured are treated.

So what do you mean by finite medical resources? We're talking about one suitable donor of bone marrow. That person simply needs to be located. Tia has plenty of doctors, and the hospital has plenty of surgical suites and lots of supplies. And, there's still time.

Tia's conditions are not "incurable" by the way, which is why her doctors are looking for a match.

I'm far more interested in "thoughtful discussions" on how to help this little girl, than having a discussion on whether or not we should just let her die.

EDIT for bad spell checker.

Edited February 27, 2014 by HeijoshinCool

[Swiss1960]

The ethics of charity are always complicated by considerations of viability and opportunity cost. Emotionally I feel sorrow and compession for this little girl and her parents. Intellectually i can't help but wonder if the resources, which are finite, that would be required to cure not one but 2 "incurable" conditions that are aflicting this poor girl might not be better spent on treating several children with less serious conditions.

I used to be an EMT (Emergency Medical Technician) working on an ambulance part time. Both on an ambulance and in the hospital emergency room the method of medical triage is the accepted practice of determining the most efficient allocation of medical resources between several patients. As heatbreaking as it is sometimes the circumstances force us to make painful decisions in order to help the most number of patients with the time and resources we have.

This is applicable not only to individual cases but to national and even international aid initiatives. This is not an attempt to trol nor the provocation for a flame war but an invitation to a thoughtful discussion.

This is what is wrong in your thinking: When you would register for bone marrow donor, you will NOT be helping this specific child, BUT your data will be available for ANY person who might need bone marrow transplant and for who your specifics might match.

This has NOTHING to do with triage, but with being ready to help others in the FUTURE by registering NOW.

P.S.: No, I am not registered, as some medical history does not allow me to be donor.

[RubberBroke]

Bringing this on Thai Visa was a good idea as this is one potential zone in which a suitable donor might be found.

May I suggest another: If anyone has any contacts no matter how remote to the Thai Media (Actors and Actresses) then please help spread the word there. Most of them have mixed parentage and are of an eligible age.

Don't know how else I can help but will think of something.

Edited February 27, 2014 by RubberBroke

[sirchai]

Also just to be clear - I have no reason to be involved with Tia or her family other than hearing of her on the news and Facebook - I simply want to help them spread the news and see if there is anyway I / we can help. I am hoping to meet the family soon to get a better understanding of how we can help and the type of support they need.

Thank you all for your help please keep it coming

Anyone have a contact that can find out how much 5000 a3 flyers might cost to print ??

Email them to me and I'll get them printed.

Where do you want them sent?

I'd contacted various people and would like to know if any help's needed to create some flyers? Could produce them, if I have the needed information, plus get them printed out and send to? Good luck for the kid.-

[easybullet3]

It seems to be a 30% chance that the direct family members can donate their OWN bone marrow to their child.

I ASSUME that this has already been tried,,, but realy... HAS ALL THE FAMILY TRIED ???

families are VERY BIG,, aunties, uncles, cousins, 2nd cousins, 3rd cousins,,, ONE FAMILY CAN HAVE AROUND 30+ members. (some familys have in excess of 50+ people or more when you take all the 2nd and 3rd cousins into account).

i STRONGLY SUGGEST you tell the parents to order their ENTIRE family to get tested if they have the correct tissue.

I copied this from the NHS website.. I am SURE that the parents already know this!!

------------------------------

Ideally, bone marrow should be donated from a close family member, such as a brother or sister, because there needs to be a close match between tissue types. However, only around one in three people have a close relative with a matching tissue type.

For this reason a number of bone marrow registers have been set up listing people who are willing to donate bone marrow if required.

When a donation is needed, doctors search the bone marrow register to try to find a donor with a matching tissue type.

In England, there are two bone marrow registers, which work closely together:

• British Bone Marrow Registry, which is part of the NHS
  
• the Anthony Nolan Trust register, which is operated by the charity the Anthony Nolan Trust