When 2 thal minors want to have children.

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Offline §ãJ¡Ð ساجد

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Re: When 2 thal minors want to have children.
« Reply #45 on: July 31, 2006, 11:44:25 AM »
Actually, based on what I have read of theology, Hinduism has a more open mind on this topic .... a more woman-friendly approach, if you will. Hindu texts take a fairly ambiguous approach to this whole issue

Yes you can compare different views of the reliigons from the following links. I can say that the information about Islam in the link is correct.

For Church of England: http://www.bbc.co.uk/religion/ethics/abortion/relig_anglican1.shtml
For Catholicism: http://www.bbc.co.uk/religion/ethics/abortion/relig_catholicism1.shtml
For Islam : http://www.bbc.co.uk/religion/ethics/abortion/relig_islam1.shtml
For Hinduism : http://www.bbc.co.uk/religion/ethics/abortion/relig_hinduism1.shtml
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Offline Poirot

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Re: When 2 thal minors want to have children.
« Reply #46 on: July 31, 2006, 12:04:27 PM »
When I see these thals in some places give up one after another, I know there's plenty of thals who see no reason to live...I think hearing the other "positive" side can help them but the other side needs to recognize that this huge problem of feeling life is not worth living exists wide scale.

Andy,

Think back to the reasons that made you and Shilpa undertake the trip to Maldives? Was it just to listen to the stories of the Maldivian Thals and to come up with a "balanced" picture? Or did you have a more positive reason for the trip? Does that positive reason dovetail with the more positive posts on this topic earlier?

I would like to put up three points for discussion here:

1. I don't how to say this correctly, but balance is not always good. Our objective here is to provide positive support for all Thals, not to tell them, sorry buddy, you are toast, no matter how bad their current circumstances may be. And, I think you only have to look to Maldives for supporting evidence of this.

2. I know (being in India) and you know (having travelled and interacted with us) how bad the condition of many thals are in "third-world" countries. But, a lot of the issues relate to past problems. IMO, for large problems (which Thal is), one should not look at the status in absolute, but what is happening incrementally? Incrementally, all changes have been positive in India, and you have been a catalyst for such changes in Maldives. So, yes, I grieve for that poor girl in Delhi who was disappointed, and she would have represented a majority of thal cases in India 10 years back. Today, she won't be ..... at the margin, the changes are all positive. And, I believe it is our role here to keep harping on the positive. This is one reason why I had that argument with Shikha about conditions in India.

3. I don't believe putting positive stories on the board is presenting only one side ....... we have talked about our issues plenty .... but, it does act as a "beacon of happiness and friendship" to less well-off thals. In fact, I would positively exhort such thals to post their stories, so that we may "share the burden". In this dreary world of ours, the more we can talk about the positives, the more positive we become.

4. To use "third world" examples to solve a "first world" problem is inappropriate, in my opinion. You should have used examples from the context in which Jemma is based, because it is hardly likely that she is going to run into the same problems as the Delhi girl, is it?

Poirot


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Offline Poirot

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Re: When 2 thal minors want to have children.
« Reply #47 on: July 31, 2006, 12:13:27 PM »
Yes you can compare different views of the reliigons from the following links. I can say that the information about Islam in the link is correct.

For Hinduism : http://www.bbc.co.uk/religion/ethics/abortion/relig_hinduism1.shtml

Actually, that BBC post about Hinduism is factually incorrect in many cases, including its foundation/basis of "ahimsa" (non-violence) .... the latter is really the foundation of Buddhism and Jainism. In hinduism, it was co-opted by Mahatma Gandhi in the early 1900's during his fight for Indian Independence. In Hinduism, pre-Gandhi, it was "mandatory" for a person to combat evil by every means, including violence. Krishna explains this beautifully to Arjun, in the Gita, about why he must wage war against his cousins and uncles.

Oh well, that link is a typical media post!!

Cheers

Re: When 2 thal minors want to have children.
« Reply #48 on: July 31, 2006, 12:21:07 PM »
Ah, that was actually my opinion Danielle.  Not sure where the confusion is there?  I don't bother with whatever "Flames" are, in fact I rarely bother with the internet full stop.  Still, Ill take whatever my post brings square on the chin...I’m a big boy after all :-) And when I feel compelled to articulate an opinion or take a position, I do so wholeheartedly and like to think I leave no confusion.

As to the second point you raised, I'm not fully cognisant of the treatment regime in the USA but yes, as a matter of fact, for my wife that is pretty much the procedure we go through now. There are yearly MRI scans, ECG and ECHO, CT liver scans, Bone Density Scans, frequent blood tests and  the occasional UTI  {Urinary Tract Infection} problem and, of course, other issues related with the condition that require ongoing monitoring and preventative health maintenance.

I’m not overly enamoured with the standpoint Jemma has adopted Danielle and, surprise surprise, unlike your own President I do actually believe in a woman’s right to chose...however....I have an uncomfortably intimate understanding of the unfortunate stigma relating to Thal Majors in two large Victorian, Australian ethnic communities in particular.  I'm not sure if you endure the same dynamics yourself, but I do actually have a pretty sound understanding of what I am talking about...hence the reason I ventured MY opinion! 

I don't coat my words in sugar and leave people guessing...I shoot straight and ill take what comes as a result.  I'm not Thalassaemic, but I love one more dearly than life itself....or perhaps just as dearly?  Whats more, I happily take time off work and drive 350kms every two weeks and book a room for the night for my wife’s transfusions...or MRI's...or UTI's or whatever she needs or has to have done and count myself blessed to be able to do so.  Its my honour Danielle, its part of my life Daniell, its part of my wife!  Part of what makes her the incredibly independent, caring and DAMNABLY tough person that she is. 

In closing I will state my opinion clearly for you:  A manageable genetic disorder with constantly improving treatment options and the very real possibility of gene therapy targeting is a VERY poor reason for terminating a human life.   

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Offline Poirot

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Re: When 2 thal minors want to have children.
« Reply #49 on: July 31, 2006, 12:38:29 PM »
I wanted to post my similar thoughts too, but chose not to because this topic was for Jemma to help her decide. Furthermore, the other Thals have totally different point of view.

Sajid,

You should post your views and not worry about other thals having different points of view. Thats what makes for an open discussion and we all learn from it. And, I mean that, in toto.

Poirot

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Offline SalD

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Re: When 2 thal minors want to have children.
« Reply #50 on: July 31, 2006, 12:45:25 PM »
Hi!

:blush  I don't live with thalassaemia major and I don't know if I'm a carrier yet (I read this board often as I work with/for the thalassaemia community in Victoria, Australia), but I would like to make a small (humble) point...

I'd just like to pick up on something TruBlu said
Quote
I do actually believe in a woman’s right to chose
.  The thing is that now with testing to diagnose a carrier of thalassaemia, as well as diagnose a foetus with thalassaemia, there are many choices that a FAMILY (not just a woman) have to make about thalassaemia.  For someone who doesn't know anyone who lives with thalassaemia major, it is very hard to be informed about the reality of living with this condition and hence make a choice.  Thalassaemia carriers are a large proportion of the thalassaemia community too, and I believe that this board is also to offer them support and advice (based on the fact there is a Thalassaemia Minor section).  Doctors can give medical advice about life with thalassaemia, but they cannot provide personal experiences - only you guys can do that!

I salute everyone who has expressed their opinions and shared their stories so far in this thread.  It is obvious that this is an emotive topic and people have strong beliefs, and this makes it hard to read other people's opinions without getting angry!  I really hope that this discussion continues in different shapes and forms on this message board, and is able to help newcomers to form their own opinions. 

IN SHORT (as I think I have waffled unlike TruBlu):  I think this discussion is difficult but important and wish I could contribue in a more helpful fashion.  GOOD WORK to all those who have been able to express their opinions.   :clap

SalD.

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Offline jemma

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Re: When 2 thal minors want to have children.
« Reply #51 on: July 31, 2006, 12:52:33 PM »
Dear Tru Blue,

I believe you may have misunderstood me.  Let me explain......  I have no problem with any Thal major person.  My cousin is a Thal major. I do not look at her and think to myself gee her mum should have aborted her.  Her condition is rarely talked about unless she has something to say about it.  She herself has offered me support.  She is having blood transfusions once a week now,  and thinking about quitting her part time job as a teacher because she is too tired.  She has no children as she dosent know how long she will be aroud for.  She is 37.

I have another cousin who has Down Sydrome.  I see her no differently to any of my other cousins.  However when performing the CVS test they look for that as well and if Down Sydrome had presented itself i would be in the same predicament.  It dosent mean i see Louise (my cousin) in a different light.  I am glad and happy that she is here with us.

My sister in law had an abortion purely because it was the wrong time.  Would i do the the same? Definetely NO!!!!!!!!  However i offered her whatever support i could.  And at a point i was so angry at her but i nver showed it to her.  I was angry because she had a perfectly healthy baby that she aborted.  What good would it have done if i just preached about what she should have done?????

I praised Danielle for being so honest and brave because she spoke objectively.  She did not once say what i should do but rather giving me the good with the bad.  She gave me the TRUTH of what it really is like.  What Danielle touched on is exactly what the genetic counsellors and myself spoke about in great length.

I have thought about adoption.  I dont trust myself though to love someone else's child like i love my own biological child.  And leaving my husband and marrying someone else.............HA HA  We have a beatiful daughter who loves us both and i love my husband too much.

Your wife is agrown woman who has learnt to deal with this condition way before you came along.  I want you to think of all the medical procedures your wife has gone thru since you have met her but in her place i want you to think it is your 2 year old child.  Its all a very different ball game.  

I have no idea what i am going to do.  I have looked at all posts again and again.  I am seeing a genetic counsellor again.  This is an incredibly difficult decision for me.  This is not a personal attack on any thal major person.
I AM NOT taking this decision lightly.

Thank you...

Miaki,

Thanks for your post made me feel better. Will keep in touch :hug

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Offline Andy Battaglia

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Re: When 2 thal minors want to have children.
« Reply #52 on: July 31, 2006, 01:34:43 PM »
TruBlue,

Can you show me in what post this was said?

Quote
I had to smirk at your final post Jemma when some poor soul finally gave you the answer you were looking for and basically said he would be better off dead than living with Thal Major.

I don't recall anyone stating that so far in this thread, although I have had people tell me this privately.
Andy

All we are saying is give thals a chance.

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Offline Andy Battaglia

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Re: When 2 thal minors want to have children.
« Reply #53 on: July 31, 2006, 02:25:30 PM »
Poirot,

I'm not sure what the problem is that you have in all sides of an issue being presented. As moderator, I feel it is often my duty to ensure that this does happen, and in that role have often asked people to post, presenting their views on an issue.

Your remarks about the Maldivian trip are incomplete. We did go there specifically because the problem there is so difficult. In spite of reasonably adequate basic case in Maldives, many patients there still do give up and refuse to chelate or do any of the things that will keep them alive. The sad fact is that the oldest patient there is only 26! Yes, we were there to preach the positive but there is and was no way to do this if we are going to ignore the negatvies. We surely couldn't go into Maldives and tell them life is a bed of roses if you're thal, because they're too smart to believe such a statement. They know the negatives and make no bones about telling us what the negatives are there. I do feel that Danielle has been extremely honest in her approach and given the bad along with the good. I guess we can be like my president and just talk about the good and ignore what doesn't suit that point of view, but I choose not to. I am still quite amazed that a citizen of India can make some of the statements you make about being a thal in India. Face it Poirot, you are one of the priviliged in India. How many of your countrymen are provided the care you get? How many thal majors die before the age of 10 due to lack of even the most basic care? You can't ignore that this happens widely in India, Pakistan, Thailand etc. It is a pure and simple fact. Things may have changed greatly in India, but this is not for all thals and many still find life involves little if any care. How many Indians can afford desferal? Not everyone can use L1. When I was in India and saw the incredible amount of poor people living in the cities (far more are in the rural communities), my thought was "how many of these are thal carriers and what life do their thal children have?" It can't be ignored. How many millions live in India with little or no medical care available? You know what happens to their thal children. They die young. Yes, India has changed, but it still has a long way to go just in terms of survival, let alone the huge social issues involved. How many parents in India would allow their son to marry a woman with thal? When the answer is zero, please let me know.

As for the point about addressing Jemma. Every single post here is read not only by the writer and whoever it is directed at, but also all of the other members and at least an equal number of non-members from all over the world. I seldom post to one specific person. This topic will be read by countless people, many of whom are facing the same dilemma and I will not narrow down the issue to what anyone's perception of Jemma is, which in my view has been a sometiimes distorted perception. Jemma came here for advice and support and quite frankly, she was attacked repeatedly by some of the members and is still being attacked and misunderstood by some. If anyone doesn't get it by now, Jemma really does not want to be put in a position where the pressure to abort will exist. In spite of all the positives everyone has said about thal care in Australia, in her immediate life, the pressure from those around her is to abort in the occasion that she becomes pregnant with a thal major. That is her reality and all the talk about thal being a wonderful life is not going to change the minds of those around her. Perhaps if she can get her husband and doctors to read all these posts it may have some impact on them, but we are dealing with pre-conceived notions and they are not always easy to change. Attacks and smirks will not change any of this. As we have seen with the Maldives, decent care and well wishing does not solve this problem. Maldives needs a huge shake up in their society to educate the general public that thals can and do live real lives, that include careers, marriage and children. Until this happens, many thals there will continue to see no reason to live, as their social future remains quite often bleak. Every week I have another Maldivian tell me that someone broke up with them because they are thal and the parents will not allow it. Without the hope for basic human companionship in life, many thals do give up. This has to change in Maldives, and frankly, after reading TruBlue's post mentioning how so many people within the communities producing thals in Australia, also treat thals badly and either aren't allowed or would even think of marrying a thal, there is obviously MUCH work that needs to be done to change attitudes in the very developed Australia.

Poirot, I am not going to sugar coat thal and pretend there are no negatives. What rubbish that idea is! How many of our members know much better than that? If we are only going to present positive feel good posts, then should we delete the whole Mumbai bombing thread? I think not! And I really think we will do a huge disservice if we only present positive posts. Part of our objective is to educate and part of the reason for that is to find help for people everywhere. If we sugar coat everything, who is going to believe thals need help?!!! If the negative is never discussed, it won't change.

I will continue tp present or ask others to present varying sides of issues here. Yes, we will stress the positive, but only presenting the positive will do a huge disservice to our members and thals everywhere.

And for the record, in Maldives, Shilpa and I presented an extremely positive message but at no time did we tell anyone we didn't want to hear what is negative. Only by hearing and understanding the negatives can we ever change things for the positive.
« Last Edit: August 01, 2006, 02:10:43 AM by Andy »
Andy

All we are saying is give thals a chance.

Re: When 2 thal minors want to have children.
« Reply #54 on: July 31, 2006, 02:52:27 PM »
No one "stated"  it Andy, I deduced from the following:

{Im not sure how to do quotes, so bare with me please}

I'm going to be 30 years old this year, and my mother still cries to this day about me having this illness.  She obsesses every day about losing me, or what life would be without me.  That's the life of a parent with a Thal Major child, and it breaks my heart every day.

I probably seem extremely hypocritical, but I just wouldn't want my child to have to endure the pain that I have dealt with my entire life.  I also think it would be horrible for me to wonder if that child will still be breathing the next morning, after tucking him/her into bed at night.  It would drive me insane.   

I am not saying what everyone should do.  I'm saying what I would do.


I might be wrong in the conclusions I drew, and maybe more than a little emotional when I fired off the post.   My conclusion is doubtless biased by my own experiences and outlook on life Andy, as are everyone elses.  My intention was to give my opinion, emotions and all. Subject it to forensic analaysis if you want, and action accordingly as is your right and responsability as the administrator of the group.  I will have no problem with that as I've said my peace and feel the better for it.

Readers will pick and chose as accords their own opinions on the issue but my post has been greatly cathartic for me and has served to remind me of just how lucky I am that my wife was not discarded by her parents.  I rarely see eye to eye with my wifes parents, but for the gift of her life I will certainly pay them due thanks.

On a different subject, I think you do a fantastic job and applaud the diplomacy you excercise to great effect time and again in these forums.  Your a genuine "Top Bloke" as we say over here in Australia and I think your friend Lisa would certainly approve of the quiet resolve you demonstarate so admirably.





   
« Last Edit: July 31, 2006, 03:01:00 PM by TruBlue »

Re: When 2 thal minors want to have children.
« Reply #55 on: July 31, 2006, 02:57:26 PM »
How does that song by "Chumbawumba" go again?  The TubThumping one....

"I get knocked down"
"But I get up again"
"You aint never gunna keep me down"

The rest of it is pretty much about alcohol from memory, but I always liked that part.  My wife always humms along to it when it reappears on the radio. I have a sneaking suspicion it means alot more to here than a mere beer drinking song....It must anyway as she doesn't drink  :wink

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Offline Andy Battaglia

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Re: When 2 thal minors want to have children.
« Reply #56 on: July 31, 2006, 03:10:44 PM »
TruBlue,
For the purpose of clarification, even though Danielle said what she did about life as a major, if you read her posts you will see someone who embraces life to its fullest and is very much happy to be alive. She would never say she wishes she was dead. She did say she wouldn't recommend life as a parent of a thal and that is based on the experience she has had in her own life. I feel this speaks more to Danielle's personal compassion towards parents and not wishing them the difficult life of raising a major. She speaks through her own eyes and has seen the effect on her own parents.

However, I have talked to thals around the world who have told me they wish they were never born and that is a fact, sad as it is, and I feel that one of the main goals of our group has to be changing this attitude. Thals have to be given the same opportunities anyone else has in life and the acceptance into society that is needed to give them the incentive to comply with treatment and stay alive.

I'd like to thank you and Jemma and Jean for your kind comments in this thread. I do try to keep us all together and intervene when I see a discussion losing its focus and wallowing into areas where there can be no productive outcome. I also try very hard to carry on in Lisa's spirit and present things the way I think she would want. The approval of her family and friends tells me I am doing at least a minimum to make that so.

To everyone, this topic is one that is loaded with emotion because of the abortion issue. I would ask that everyone read thoroughly and even read between the lines when necessary. Yes, Jemma did ask about abortion but if you read every comment she has made, you will discover this was never her own idea. She abhors the idea and this is why she came here in the first place. She isn't looking for anyone who will help her justify having an abortion. She wants our input into what everyone thinks is the right course of action. I stated in my early post in this thread that she needs to find her inner strength before having anymore children, thal or non thal, and I stick to that. We can help her by showing her how we find the strength to deal with the problems of parenthood. This is a very positive approach and we can have some impact on her and we can help her find some strength by being her friend and supporter. I am not about to judge her, no matter what decision she makes and I hope no one here feels they can act as God and be her judge.

Thank you all.
Andy

All we are saying is give thals a chance.

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Offline Andy Battaglia

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Re: When 2 thal minors want to have children.
« Reply #57 on: July 31, 2006, 03:16:06 PM »
By the way, TruBlue, I know your wife and she is a wonderful person and is a shining example to be shown to all those blockheads who refuse to let their children marry a thal. She has everything I am constantly preaching thals should be allowed to have and is someone I often hold up to thals in places like Maldives as an example of how it should be. Your support as a husband has no small part in this and is a lesson to compassionate people everywhere. We need to create this situation universally so that every thal can have what your wife has...a normal life just like everyone else.  :biggrin
Andy

All we are saying is give thals a chance.

Re: When 2 thal minors want to have children.
« Reply #58 on: July 31, 2006, 03:26:51 PM »
Oops, if she sees I've been posting I may well get in trouble.  She loves the outlet this forum provides and adores the friends she has made here. Often, when she's a little down after work or close to her transfusion date , she will log on and bounce back in no time.

I should have asked her before posting, but I never do let thinking get in the way of action LOL  Much to my dettriment im afraid  :dunno

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Offline Danielle

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Re: When 2 thal minors want to have children.
« Reply #59 on: July 31, 2006, 05:05:43 PM »
For the purpose of clarification, even though Danielle said what she did about life as a major, if you read her posts you will see someone who embraces life to its fullest and is very much happy to be alive. She would never say she wishes she was dead. She did say she wouldn't recommend life as a parent of a thal and that is based on the experience she has had in her own life. I feel this speaks more to Danielle's personal compassion towards parents and not wishing them the difficult life of raising a major. She speaks through her own eyes and has seen the effect on her own parents.

Exactly.  Thank you, Andy!   :biggrin

 

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