life with thalassemia

  Thanks Zaini! 

Thank you for posting about your own experiences as a parent, too.  And I completely agree that it is about the individual - you, me, everyone else is an individual - so no two experiences or even situations and resulting advice would be the same.

I too want to thanK Hbh for your honest answer. As a mom of a recently diagnosed child, I want to hear it like it is and know what I need to prepare for.
Thank you

Thank you everyone for your thoughtful responses.  They are really helpful!

HbH, what a good answer...it was an insight into your mind and life...I think questions would have found all the answers in that one!
All the best to you, HbH...hats off to you...and I am in awe of your strength, patience and writing as well!
Madhavi

If I wasn't being honest, then I feel that I would be doing a disservice to both the parents of thal children (who have thal themselves) and the children with thal who have all worked so very hard to get to where they all have gotten to.

I very much admire the parents who have so much patience and love and compassion and courage for their children and who have put so much of their time and energy into caring for them and I very much admire the children who have done the same - caring both for themselves and their conditions and for other people.

Hard work should be rewarded and to me, that means being honest.

I am glad that my honesty is appreciated.

My husband and I both carry the thalassemia trait and we are planning for our future.  I would like to know anything you are willing to share.  What is it like to care for a sick child or live with thalassemia?  what are the hardships, what are the rewards?  Would you do it all over again?  If it is easier to speak privately I can send a private message.  Thanks!

I am wondering why PGD isnt recommended to such parents before a thal child is born like it is afterwards to try to get another non thal child for bone marrow matching?
Zahra

There is an article about the current state of BMT in a post at http://www.thalassemiapatientsandfriends.com/index.php/topic,3910.msg39215.html#msg39215  HLA-matched sibling bone marrow transplantation for B-thalassemia major.

There is also a discussion on Facebook between myself and Dr Arthur Bank about this topic.    
Interesting Discussion on Facebook about "France sees first 'saviour sibling'"  http://www.thalassemiapatientsandfriends.com/index.php/topic,3889.msg39040.html#msg39040

The Facebook link is http://www.facebook.com/permalink.php?story_fbid=124764174263936&id=78504283219

Many of the issues about BMT are discussed in these articles and posts.