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

[Blackandwhite]

Tia Pugh immune deficiency

https://www.facebook.com/pages/Tia-Pugh-immune-deficiency/249924451836434?fref=ts

Please like the facebook page and share it

Please can some tell me how to create a better post about this Tia lives with her Thai mother and English father she has two very rare conditions that are at present un treatable with out bone marrow transplant - anyone world wide can offer themselves for testing as they can mix and match bone marrow to find a match. There is a world wide organisation that hold peoples details worldwide - I am trying to find out who they are - if anyone knows then please post here

Tia's Mum is from Northeast Thailand with parent of ger coming from Cambodia - Father white British

Please help

[benalibina]

Good luck and my compliments for you trying to help. A rare breed.

[7by7]

There is a world wide organisation that hold peoples details worldwide - I am trying to find out who they are - if anyone knows then please post here

I'm already on the British Bone Marrow Register; this means I'm also on the international register.

Like giving blood or carrying an organ donor card, registering is simple and easy; and it may save a life.

For the UK: Q&A

How can I join the register?

You must be aged between 18 and 49 years old (registered before your 50th birthday) and be a blood donor. You can join when you next give blood, or at the same time as your first donation. We will check that there is no medical reason preventing you from being both a blood donor and a stem cell donor. At the time of your blood donation we will take an extra blood sample, so that we can identify your tissue type for the registry from your DNA - the genetic material our bodies are made up from. Please inform the staff at the blood donation session that you wish to join the BBMR before your blood donation is taken.

Stem Cell Registries

Bone Marrow Donor Worldwide links bone marrow donor registries internationally using only tissue-typing to establish rapid identification of potential donors. You can be assured that your personal details are only available to the staff of the BBMR and are not available to international agencies.

Edited February 21, 2014 by 7by7

[Blackandwhite]

Thanks for the reply's - more welcome - this is a real heart breaker

Sent from my iPad using Thaivisa Connect Thailand mobile app

[HeijoshinCool]

Maybe, and I could be wrong, but maybe this would be better in the Teaching in Thailand forum. When I taught, I knew a few kids who had mixed parentage and the likelihood of a marrow match increases greatly with a mixed heritage donor.

Anyway, teachers might be in a better position to locate potential donors.

What a forlorn expression on a beautiful little girl who should be smiling big while she dances to Peppa Pig.

At least keep posting regular comments, guys, so it stays first in line all this weekend and gets good exposure.

http://www.anthonynolan.org/news/2014/02/07/race-save-three-year-old-tia-pugh

http://www.dailymail.co.uk/health/article-2552987/Tia-Pugh-needs-bone-marrow-transplant-battles-TWO-incredibly-rare-diseases.html

[Blackandwhite]

This is a child that needs help - thanks for the Pm with a great suggestion.

This is serious

[HeijoshinCool]

Wish there was something I had the power to do to help. I've led a full life, and if I could I'd gladly trade it to save hers.

[HeijoshinCool]

I'm saddened by the lack of response to this thread.

There are thousands of expats living here. There must be thousands of mixed-heritage children under 35, both here and abroad, one of whom could save this little girl's life.

Tia will die without a bone marrow transplant.

I know there are a number of great people who are regular posters here on TV. Why not stop posting, for what? thirty minutes? on threads about bargirls and scams and the annoying things other expats do, and send out some emails?

Forward the links above, including Tia's Facebook page, to people you know who have mixed-heritage children---who are the ideal donors----or know couples who have mixed-heritage children, or if older, to those children themselves. Give it some thought, you'll think of someone. I did.

Heck, forward Tia's Facebook page to anyone with Facebook.

Ask them to forward to others, and maybe, just maybe, someone will see your email, or the Facebook page, get checked for compatibility, and learn they are a match.

Spare just a few minutes of your blessed long life, to save Tia's short life.

And keep this thread alive for its exposure.

[Sam Gold]

What a brave little girl.

I don't have a Facebook account but if I think of anything I can do I will be sure to do so.

My thoughts are with Tia and her parents.

Edited February 24, 2014 by Sam Gold

[Showbags]

Does testing hurt ?

I would imagine it is not a pleasant experience.

So a certain aged mixed blood person would be required....doubt you could ask a young child to do

Hope she finds what she needs regardless.

[Blackandwhite]

Please guys spread the word here for this family - this is the update yesterday - as a parent can you imagine writing this

Tia seems to be doing really well considering how much medication she is on. We had a great time at Peppa Pig world even though Tia would not go on anything. We are seeing the doctor tomorrow about her bloods being used for research as thousands of pounds are being spent on doing this. They are really interested in looking into it and she has been put on top of the research list. This is something which the NHS cannot afford to do so the pharmaceutical industry are paying. The paperwork we are looking to sign seems very important so we are looking to get advice. Tia could also be a important case towards other rare diseases and illnesses even her immune deficiency is puzzling them now. Hopefully they make a cure but we have been told that it won't be for her but for future patients. Team Margot event of which was held yesterday seemed busy and I met a few interesting people. I met little Margot's father Yaser who seemed very knowledgeable and learnt a few interesting points but I did stress that I'm new to the bone marrow registry awareness and I think I can also encourage more people to register so I do have some plans in doing this. Our trip to Peppa Pig world was kindly offered to us from Matt Denning of Matts Mission who helps sick children and we thought "why not" as it would be a great way of meeting other people with similar issues with sick children,Matt is a really nice guy with a big heart and you should see his Facebook page in what he has done. His link should be on this page. Do have a read. Some people are starting to make or think that there's nothing wrong with Tia and we've asked our doctor this of which his reply is it's the medication but not a cure and cannot be forever either as some of the drugs can cause deafness with serious side effects if on for to long and even though she looks well on the outside she isn't on the inside. Thank you for all your messages likes and shares keep sharing the as it makes us feel better inside

[Blackandwhite]

Does testing hurt ?

I would imagine it is not a pleasant experience.

So a certain aged mixed blood person would be required....doubt you could ask a young child to do

Hope she finds what she needs regardless.

Guess it would be uncomfortable - not sure it would hurt for an adult especially knowing a child was in pain and scared at the same time as the procedure was happening

See link below for how it is done - first all you need to do is register and they send a kit to you - there is a place you can go in Thailand if your wishing to find out more let me know and someone might be able to post a link to how and where

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

[samran]

Does testing hurt ?

I would imagine it is not a pleasant experience.

So a certain aged mixed blood person would be required....doubt you could ask a young child to do

Hope she finds what she needs regardless.

Guess it would be uncomfortable - not sure it would hurt for an adult especially knowing a child was in pain and scared at the same time as the procedure was happening

See link below for how it is done - first all you need to do is register and they send a kit to you - there is a place you can go in Thailand if your wishing to find out more let me know and someone might be able to post a link to how and where

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

testing is done via a simple blood test which is sent to the registry. Not painful.

Actual bone marrow extraction, depending on the donor they'd be given a local or a general and the marrow extracted from the pelvis area. Recovery is short, with some soreness in the donor for a day or two.

[HeijoshinCool]

What a brave little girl.

I don't have a Facebook account but if I think of anything I can do I will be sure to do so.

My thoughts are with Tia and her parents.

Anyone who has even the remotest of media contacts in Asia could try to get Tia's story told.

Perhaps flyers at a university with Tia's Facebook page would be an idea. Uni students love "drives," especially for toddlers.

Bone marrow can be donated by those between 18 and 60 (some exceptions are made) and I can't imagine there are less than thousands of mixed heritage potential donors in that age grouping, living here and abroad, who would get the blood test if they were aware of Tia's condition.

[ford8]

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 ?

[Thai at Heart]

What a brave little girl.

I don't have a Facebook account but if I think of anything I can do I will be sure to do so.

My thoughts are with Tia and her parents.

Anyone who has even the remotest of media contacts in Asia could try to get Tia's story told.

Perhaps flyers at a university with Tia's Facebook page would be an idea. Uni students love "drives," especially for toddlers.

Bone marrow can be donated by those between 18 and 60 (some exceptions are made) and I can't imagine there are less than thousands of mixed heritage potential donors in that age grouping, living here and abroad, who would get the blood test if they were aware of Tia's condition.

How about someone send it to the thai embassy in london. They have register of hundreds if not thousands of thai women living in the uk....

[HeijoshinCool]

What a brave little girl.

I don't have a Facebook account but if I think of anything I can do I will be sure to do so.

My thoughts are with Tia and her parents.

Anyone who has even the remotest of media contacts in Asia could try to get Tia's story told.

Perhaps flyers at a university with Tia's Facebook page would be an idea. Uni students love "drives," especially for toddlers.

Bone marrow can be donated by those between 18 and 60 (some exceptions are made) and I can't imagine there are less than thousands of mixed heritage potential donors in that age grouping, living here and abroad, who would get the blood test if they were aware of Tia's condition.

How about someone send it to the thai embassy in london. They have register of hundreds if not thousands of thai women living in the uk....

Sounds like an idea. There might be "privacy" issues, but even some posters around the embassy would help.

Is there a "Thai Town" in London? How about flyers and posters there? In the shops and restaurants.

[Sam Gold]

What a brave little girl.

I don't have a Facebook account but if I think of anything I can do I will be sure to do so.

My thoughts are with Tia and her parents.

Anyone who has even the remotest of media contacts in Asia could try to get Tia's story told.

Perhaps flyers at a university with Tia's Facebook page would be an idea. Uni students love "drives," especially for toddlers.

Bone marrow can be donated by those between 18 and 60 (some exceptions are made) and I can't imagine there are less than thousands of mixed heritage potential donors in that age grouping, living here and abroad, who would get the blood test if they were aware of Tia's condition.

Any chance we could get a summary of the situation in Thai? It would make it easier to spread through networks of Thai people.

[Blackandwhite]

I will arrange for a summary of the condition and situation in Thai - it is slow burn here as I am only trying to help the parents of Tia they also are having to deal with hospital visits and coming to terms with Tia's illness.

I will get in touch with them today and see what they thinks and what they can send

Thanks for all your post it is good to hear your ideas -

Cheers

[Blackandwhite]

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 ??

[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?

[7by7]

How about someone send it to the thai embassy in london. They have register of hundreds if not thousands of thai women living in the uk....

The various Thai temples in the UK may get a better response than the embassy.

I didn't even know Thai's in the UK could register with the RTE; my wife and step daughter have been here for over 13 years and they haven't!

[HeijoshinCool]

How about someone send it to the thai embassy in london. They have register of hundreds if not thousands of thai women living in the uk....

The various Thai temples in the UK may get a better response than the embassy.

I didn't even know Thai's in the UK could register with the RTE; my wife and step daughter have been here for over 13 years and they haven't!

Great idea.

And the same in the EU, States, and Australia.

Please keep the ideas coming and some of us will act on them.

[Blackandwhite]

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 )

[Blackandwhite]

You can view the FB page without being a member - I think

[Loles]

I would be donor if I can but I'm not in facebook.

Give my TV username to them. I'm in BKK.

Regards.

Dear TV Mates, this procedure is a bit uncomfortable but may be you can give long life to this lovely ans sad girl. So do join to me!

update: just see clear need under 35 half-mixed person. sorry.

Edited February 25, 2014 by Loles

[HeijoshinCool]

I would be donor if I can but I'm not in facebook.

Give my TV username to them. I'm in BKK.

Regards.

Dear TV Mates, this procedure is a bit uncomfortable but may be you can give long life to this lovely ans sad girl. So do join to me!

update: just see clear need under 35 half-mixed person. sorry.

You can be over 35. That was my mistake, taken from another website.

The test for compatibility is painless.

In Thailand, here is where you go:

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/ Date registered: 2005-08-23

[Blackandwhite]

Okay people most of the information is here now to those that have helped with this and the posters that have shown intrest. I did ask Thai visa board admin to try and change the post but up to now they have not be helpful.

Please tell all your friends about this and maybe just maybe it will make a difference.

We need it to go out to any news stations

We need donors that may match directly to Tia or with a combination so everyone is welcome the address is above for bangkok

We will be distributing flyers sometime soon

We Would appreciate if you know of anywhere that might increase awareness of this please tell them - schools, universities, business groups maybe like rotary

Is there anyone a member of rotary on TV

Just help to spread the word to increase the amount of donors would be a great help

Thanks so much

Anyone on admin that can help change the heading of this topic please tell me

Sent from my iPad using Thaivisa Connect Thailand mobile app

[samran]

Out of curiosity how long has the bone marrow donor search been going on? My understanding is that it may take a few months, which I understand feels far from ideal, but certainly a function of casting the net far and wide.

[HeijoshinCool]

Out of curiosity how long has the bone marrow donor search been going on? My understanding is that it may take a few months, which I understand feels far from ideal, but certainly a function of casting the net far and wide.

From what I understand, about one month now, Samran. Thanks for coming back, and for asking.

C'mon folks. This little girl isn't yet three years old. She can not understand what is happening to her. Why she gets jabbed with needles so much. Why she has so many open sores that hurt so much, and why can never be with other children. Why she is in the hospital, again and again. Why she has a tube rammed up her nose and down her throat.

Many of you here, and abroad, have beautiful children. They are healthy and happy. They have their little friends. They eat regular food, through their mouths. Imagine if your child, like Tia, had Stat-1 immune deficiency, and a nasty form of tuberculosis-like illness. Tia is believed to be the only human on Earth to have this combination.

That makes her 1 in a 7,000,000,000, so in my book, she's astronomically special.

I'm not a fan of Facebook, but take a few minutes from posting about dangerous Thai roads, and Paranormal Activity, and muay thai fights in prison, and not having our booze on election day, and check out Tia's Facebook page. Take a few minutes each day to actively try and save a toddler's life.

Then, please, we need to start drives, anywhere we can, to make people aware, encourage them to be checked for computability to donate marrow. Painless to check, but even if it hurt like hell, wouldn't you?

Anybody near major universities, who can hand out/post flyers, if they are mailed to you?

Anybody near a "Thai Town" in any major city, anywhere?

Anybody near Asian markets in western countries, where a poster could be hung?

Anybody have contacts with media?

Anyone near a Thai embassy in any country, who can deliver posters/flyers?

Anyone near ESL schools in any country, where Asians are taking classes?

Anyone have any other ideas, where flyers/posters would be seen by those of mixed heritage Asian/Euro/American/Australian descent?

Tia does not deserve to have this kind of life. She's a toddler.

Tia needs a donor of mixed heritage, as her mother is SE Asian, and her father English. It can be done, another mixed heritage little girl found a donor just last month (see Tia's FB page).