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

[samran]

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

It is actually 1 in 4 for a sibling to be a perfect match. However in this case it doesn't appear the child has a sibling.

If the fathers marrow is

AB

And the mother is

CD

Possible combinations for the childs marrow are:

AC

AD

BC

BD

So in this case the child might be AC. She'd need a brother or a sister who was born as a AC type marrow.

The slightly higher percentage (ie 25+5) is the fact that there is a slight chance the parent, or in other cases, close relatives have near enough matches. But it is rarer.

Usually have to go to the wider donor pool, and as already said, this is one area where ethnic heriatage helps.

And yes, when a bone marrow transplant is needed, parents and siblings are immediately tested.

Edited February 27, 2014 by samran

[wotsdermatter]

After reading the comments, I am surprised nobody mentioned that money and other things will be needed after the transplant. They cost, regardless of which country a recipient lives in. So here’s a suggestion. Therefore, please consider this proposal. Have the parents, or a reliable person, not a charitable organisation, set up a bank account with appropriate conditions applied, e.g. two people to sign for any debits to be made, etc. Let people know about the fund and the reason it has been established and where the money can be deposited, i.e. name of bank and account. Money can then be deposited and used as and when required.

I am currently in Bangkok but my return flight to Toronto is at night on 10^thMarch. If my suggestion is followed, the day I leave, before going to the airport, I would provide the receptionist where I stay in Bangkok for the winter, with all of my left over Thai currency so she can make a deposit to the fund. Yes, she and her supervisor are both honest and reliable. I can be reached through my e-mail address – [email protected]. Please keep me informed regarding this young child’s status, etc.

Keep the post on TV as long as possible. Maybe TV editors, etc., can help with that.

Edited February 27, 2014 by cdnvic
Fixed irregular font

[HeijoshinCool]

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.

Even Tia's mom and dad are thinking of others. They have signed papers authorizing tests to be done on Tia, not intended to help her, but others who have yet, but will someday, be afflicted with her condition.

Imagine that, loving your child dearly, and allowing her to undergo more testing, to possibly save a child yet born.

I would, Swiss, correct you on one point, however: registering could very well help this specific child. That's what this thread is all about.

[Swiss1960]

I would, Swiss, correct you on one point, however: registering could very well help this specific child. That's what this thread is all about.

You are right, somebody who registeres based on this thread MIGHT have the right data for helping this child, but fact is also, that person will be asked to donate bone marrow but NOT know for whom it will be used... their might be another person also with the same data waiting for longer..

what I wanted to say is this:

If somebody registeres for donation, whether blood or bone marrow or if somebody registeres as organ donor after death, he / she is doing someting absoutely invaluable and good! He will in most cases never know who received his donation, as health organizations tend to keep donor and receiver clearly unknow to each other, but the fact is - he / she did something really great by donating.

[HeijoshinCool]

After reading the comments, I am surprised nobody mentioned that money and other things will be needed after the transplant. They cost, regardless of which country a recipient lives in. So here’s a suggestion. Therefore, please consider this proposal. Have the parents, or a reliable person, not a charitable organisation, set up a bank account with appropriate conditions applied, e.g. two people to sign for any debits to be made, etc. Let people know about the fund and the reason it has been established and where the money can be deposited, i.e. name of bank and account. Money can then be deposited and used as and when required.

I am currently in Bangkok but my return flight to Toronto is at night on 10^thMarch. If my suggestion is followed, the day I leave, before going to the airport, I would provide the receptionist where I stay in Bangkok for the winter, with all of my left over Thai currency so she can make a deposit to the fund. Yes, she and her supervisor are both honest and reliable. I can be reached through my e-mail address – [email protected]. Please keep me informed regarding this young child’s status, etc.

Keep the post on TV as long as possible. Maybe TV editors, etc., can help with that.

I sure don't want to shoot down your kind offer (not for me to do anyway), but I want to note that I have noticed a conspicuous absence of anything to do with money, in everything Tia's mom and dad have posted on her Facebook page, or said in media interviews.

While I can't speak for them, if I were the parent, I'd be real cautious about making any statements to do with money. With all the scams nowadays, people get scared, balk, and do nothing.

So, my guess is that right now they are thinking only about finding a donor to save her life, not about expenses after saving her life.

When Tia's recovering from her transplant, I'll be in line next to you, helping with the expenses. No doubt lots of other TV readers will be there with us.

Actually, they did mention money once:

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.

[cdnvic]

On behalf of the forum we'd like to say how proud we are of our members who are trying to help this child. Thank you very much for your efforts.

The member who decided this was a place to pick a fight has been removed.

[cdnvic]

Please leave the medical advice to the doctors, and as the family has not requested funds, no attempts at fundraising please.

[HeijoshinCool]

Maybe time for a photo op.

[7by7]

A reminder that if everyone reading this and everyone they know registers as a donor, that may help this little girl: but to be frank, most of us will not be a match with her. However, unless you register, no one will know for sure.

Even if you are not a match for her, registering as a donor could save someone's life in the future.

Registering is quick, easy and painless.

Do it.

[sz1a]

How long does Tia have? Will the procedure be done in Thailand? Safe? I'm mixed race all european tho, but pm me.

[Blackandwhite]

How long does Tia have? Will the procedure be done in Thailand? Safe? I'm mixed race all european tho, but pm me.

At present there is no prediction to how long - I am trying to find more info on the perfect match but the request from the parent is that we spread the work and be tested for suitability based on the fact there is a chance it might help.

There is talk which I need to confirm that a combination of two donors can also help as a last resort

Thanks for your reply

[Blackandwhite]

If you are in the UK - you can see FAQ here very interesting

http://www.deletebloodcancer.org.uk/service/faq/general-questions.html

If you are in Thailand and want to help

http://english.redcross.or.th/node/53

Also most hospitals will be able to offer a service to see if you match -

If you can help spread Tia's story by putting up a flyer please see below

If you want a flyer to print and distribute please pm me your email and I will email you one in Thai and one in English

[samran]

I just might add that umbilical cord blood is often used when donor bone marrow is unavailable, given cord blood shares many regenerative similarities to donor bone marrow

Many countries in the west are increasingly collecting cord blood so this has greatly increased the potential donor pool. None of this take away from the need for as many potential donors as possible to be tested.

[HeijoshinCool]

I just might add that umbilical cord blood is often used when donor bone marrow is unavailable, given cord blood shares many regenerative similarities to donor bone marrow

Many countries in the west are increasingly collecting cord blood so this has greatly increased the potential donor pool. None of this take away from the need for as many potential donors as possible to be tested.

Good point. I was just reading about that here:

http://bethematch.org/Support-the-Cause/Donate-cord-blood/

And there is a third way to donate, called PBSC, peripheral blood stem cells, which is only a drawing of your blood. Read about it here:

http://bethematch.org/Transplant-Basics/How-transplants-work/

Both of these articles are from the same website and are informative. I learned a lot, including the common misconception, that donors and recipients must remain anonymous, is untrue.

Morning photo op:

[Showbags]

Very cute little girl...I have one also, little older....hope she gets what she needs soon.

[alanrchase]

Not too sure but I believe blood group is a bit inportant for bone marrow match? What blood group would be ok?

Sent from my GT-I9500 using Thaivisa Connect Thailand mobile app

[samran]

Not too sure but I believe blood group is a bit inportant for bone marrow match? What blood group would be ok?

Sent from my GT-I9500 using Thaivisa Connect Thailand mobile app

Not important that they match. It is the marrow type which needs to match. With a new marrow, the recipients blood type may change also.

[Blackandwhite]

I am hoping to get an update from Tia's family soon - this as ever is criticala nd all the help possible would be amazing.

There are one or two people out there you know who you are that have surpassed yourselves with the support you have offer and help with making this story heard.

Thank you so much

[HeijoshinCool]

Okay, guys, we got a good article about Tia in the Bangkok Post today.

Thanks to Justin Heifitz for writing it. Take a look, pass it around, and give it lots of likes!

http://www.bangkokpost.com/news/health/397739/tia-desperate-search-for-bone-marrow-match

I'm looking for some people to volunteer to work recruitment drives. Maybe at a university, or places like Siam Paragon or Emporium. This will take some time for me to set up, and if any of you have contacts at such places, or other public relations/media contacts, I'd love the help.

I'm in touch with Tia's mom and dad, and I've got some research to do, but I'm hoping to have people register for donation, and be tested on the spot, to be added to the international registry.

Any volunteers?

Lunchtime photo op:

[Blackandwhite]

Hi Guys - Thanks to the Thai visa mod that has kept this topic on track -

I few things I have information on

I note a few places people have talked of after ( if ) a procedure takes place Tia will need support - her care will be taken care of by The NHS in the Uk they are responsible for care, treatment and after care

Tia's family are very conscious of the efforts people are putting in and are mindful of your time and care regards this

Tia is having good days and bad days - new complications are regular

Tia is taken to hospital regularly and she is being taken to various place weekly the news changes as does the condition she has

Doctors are not certain what to do to help Tia

This condition has not been seen before

Tia's family are prepared for the worst

Tia's family need people to register as a possible donor and anybody that is happy to might just help in some way even if your not a match it might encourage someone that is

Tia and her parents live in the Uk

Tia needs people to like her page on FB

Tia needs people to share her page on FB

There is limits of age for donation of bone marrow but different agencies have different ages

Testing is simple and painless - within the is topic the addresses in the UK and Thailand that you can get more information about what you can do

Tia does love Peppa Pig

Tia is extremely brave and very pretty

https://www.facebook.com/permalink.php?story_fbid=261050470723832&id=249924451836434

Look at the above information and see if you can help

I it would be good if depending on where your from you could post details of the donor centers in your home country

For the Uk

http://www.deletebloodcancer.org.uk/

www.anthonynolan.org

[Blackandwhite]

HeijoshinCool - big clap for you Brother for helping the story hit the Bangkok Post - please can as many people follow up with Bangkok post requesting more information if there is enough intrest they might follow it up again

http://www.bangkokpost.com/news/health/397739/tia-desperate-search-for-bone-marrow-match

Please like it share and spread the word

[wotsdermatter]

Recently, near the beginning of the posted comments, I made the suggestion that a monetary fund could be set up to assist with future ongoing finances. That idea was scoffed at so am now retracting my offer to participate. Also, found out from today's postings that she could well be in the U.K. where the hospital, doctor, medication fees are not usually paid by the family but by the state, another reason not to participate in setting up a fund. No, I am not SCROOGE, just realistic, so no need to bad mouth me.

[HeijoshinCool]

Recently, near the beginning of the posted comments, I made the suggestion that a monetary fund could be set up to assist with future ongoing finances. That idea was scoffed at so am now retracting my offer to participate. Also, found out from today's postings that she could well be in the U.K. where the hospital, doctor, medication fees are not usually paid by the family but by the state, another reason not to participate in setting up a fund. No, I am not SCROOGE, just realistic, so no need to bad mouth me.

Scoff is a strong word.

The reason not to set up a fund is his thread isn't about raising money, it's about getting people to register, get tested, and see if they are a match.

Tia is in the UK, but donors are acceptable from anywhere in the world.

[Showbags]

Awwwww...wots the matta wotsdermatter....feeling left out ?...there are groups for that.

Question re red cross and/or any other hospital in bkk......can they do a blood test for other things AND do this screening thing at the same time ?

Reason l ask is l have to do a blood test for sugar and fat etc soon....could include the other if can be done at same time...for example at red cross...but if not, where can ?

[HeijoshinCool]

Awwwww...wots the matta wotsdermatter....feeling left out ?...there are groups for that.

Question re red cross and/or any other hospital in bkk......can they do a blood test for other things AND do this screening thing at the same time ?

Reason l ask is l have to do a blood test for sugar and fat etc soon....could include the other if can be done at same time...for example at red cross...but if not, where can ?

That's a good question. I'm in touch with them to set up drives for Tia, but getting your question answered might take a few day. I'll ask it.

But, hey, you have two arms, so worse case scenario, you'd get two Winnie the Pooh bandaids, and two glasses of OJ.

Or here, maybe its Angry Bird bandaids and Durian juice ….

[Showbags]

Awwwww...wots the matta wotsdermatter....feeling left out ?...there are groups for that.

Question re red cross and/or any other hospital in bkk......can they do a blood test for other things AND do this screening thing at the same time ?

Reason l ask is l have to do a blood test for sugar and fat etc soon....could include the other if can be done at same time...for example at red cross...but if not, where can ?

jesus....how much blood do you have to give.....l got 2 tests in last 4 months...1 small test tube each....not juice, and a plain boring bandaid

That's a good question. I'm in touch with them to set up drives for Tia, but getting your question answered might take a few day. I'll ask it.

But, hey, you have two arms, so worse case scenario, you'd get two Winnie the Pooh bandaids, and two glasses of OJ.

Or here, maybe its Angry Bird bandaids and Durian juice .

[Showbags]

^stupid quotes

Edited March 3, 2014 by Showbags

[samran]

Recently, near the beginning of the posted comments, I made the suggestion that a monetary fund could be set up to assist with future ongoing finances. That idea was scoffed at so am now retracting my offer to participate. Also, found out from today's postings that she could well be in the U.K. where the hospital, doctor, medication fees are not usually paid by the family but by the state, another reason not to participate in setting up a fund. No, I am not SCROOGE, just realistic, so no need to bad mouth me.

It was pretty obvious from the start that the little girl was based in the UK and given this, it would pretty much be on the NHS and the government would be supplying sufficient support for the family during this time. Not to mention other chariites which would be helping them on the way. So it was a bit confusing to see your post, but nevertheless, it was clear your heart and intentions were in the right place.

If you want to make a difference, feel free to donate to places like Ronald McDonald house who house parents who need to stay near hospitals, or other foundations which help children and others with blood cancers and the like.

Edited March 3, 2014 by samran

[HeijoshinCool]

Evening photo op:

[HeijoshinCool]

Lunchtime photo op: