Parents do join in!

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Parents do join in!
« on: August 17, 2006, 06:10:43 AM »
Hello

I  as a parent of a thalaasemic child ( My daughter will be 30 on the 10th of septbember) and  have been an active member in this group and it has benefitted me tremendously.

I have made some excellent friends here, Thalassaemics ,who are  of my daughters  age , younger or older. I have read about their innermost feelings and expressions.. how they cope, the problems they face on a daily basis and how they look at themselves for the future. They have given me a tremendous hinsight in to the world of adult thalassaemia, which has helped me to understand my position better, gain more knowlegde about the various treatments, medications etc that are prevalent. I have met people here, who are leading near perfect lives, married and with children.

So I would urge all parents of thalassaemic children, to please join in here and participate actively.. express your feelings, gain knowledge, so that you too can cope better and not despair.... learn about the ways and means of how you can offer your child a better life, create better opportunities for him or her and never feel that she or he is handicapped in any way.

And most importantly give your child the feeling that you are always with him.....get the feeling yourself that you are not alone ! It does help, when you express your feelings openly and get the support of the group.

So look forward to more and more postings from all parents!! :smile2

Regards
Shikha
« Last Edit: July 15, 2007, 05:06:11 AM by Andy »

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Offline Bobby

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Re: Parents do join in!
« Reply #1 on: September 08, 2006, 03:48:21 AM »
Hello Shika,

I am 30yrs old and when I was a child with Thal, I was actually told by Dr's that I should not have any children.  Well, I now have a healthy 6yr old girl that for her age group is in the 95th percentile for her height and weight.  My wife is now 8 months pregnant with our son. Because I was sick alot when I was a child, I feel incredible when I see he running and playing.  She's growing so fast. I look forward to the recitals and little league games as they get older. 

I have Thal Intermedia and have been doing very well since I was a teenager.  I went away to college and became a computer programmer. I have been married for 8yrs. 

This site has become my favorite because of everything that I have learned and continue to learn on a daily basis. I look forward to reading the posts and inspirational words of all the members.

I hope you and your daughter are well.

Bobby

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Offline KHALIFA

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Re: Parents do join in!
« Reply #2 on: September 08, 2006, 04:49:54 PM »
HI Shikha
            alsalam alaikom i would like you to read wht Andy post in the site  topic ( just a story )
 and you will find what i mean ...
             GOD BLESS YOU AND YOUR DOUGHTER
                    KHALIFA 
RED_PILOT

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Offline Bostonian_04

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Re: Parents do join in!
« Reply #3 on: September 16, 2006, 03:35:01 PM »
Hello Shikha,

I am very new to this forum, I joined last Thursday (Sep 14, 2006), the day after our 2 month old daughter, Piu, was diagnosed with thalassemia (both her beta-globin genes are mutated, and one of them is a null mutation - beta-0, so most likely she will be beta-thal-major).

We are originally from India (I am from Kolkata and my wife from Jamshedpur), but currently living in Boston. Both of us are beta-thal carriers (we found out the hard way last Wednesday, after the genetic test results came back). What makes me sad (and at the same time angers me the most) is that for one, there is no mandatory testing for thal for newborns in our part of the world (I think the problem is not only restricted to India, but to the whole south-east asian region) and secondly, our blood reports always showed depressed MCV (in the 60s) and Hb (11-12), but the doctors (mis)diagnosed it as anemia and put us on iron supplements.

As Andy and you rightly point out that there needs to be a global awareness about thalassemia, especially in south-east asia, where ignorance about this is mainstream. For sure, my wife and I did not have any awareness about thalassemia when we were living in India. We did not know anyone who had thalassemia - in our family or otherwise (maybe these information are suppressed due to a false thought of social stigma, I dont understand why though .. i am just thinking out aloud here). If it is so common, then there should have been information disseminated by the health officials and the government (it is me just venting .. please bear with me).

I am really glad that I have found this forum and when I read thorugh the various posts, gain knowledge and information and hear various views from other people, it gives me tremendous hope that with the current (and possibly future) medical developments, current and future thalassemic patients will have a full, rich and a significantly better quality of life and will outlive their parents.

I think we are taking our first steps towards that direction, with the introduction of the oral chelator that hopefully will replace desferal pump all over the world. There have also been some discussions regarding BMT and unrelated cord blood transplantation (for kids who don't have siblings).

Only if the awareness and education about thalassemia can become mainstream ....... one can only hope that it becomes a reality in my lifetime :)

As you rightly said, I strongly believe that our children are no different from the other children in the world .... they are just normal kids who ask for our attention and love just like any other kid. They are just a bit more anemic and so need some special attention for their well-being just like any other kid would require for their ailments.

Regards,

Bostonian_04
Quis custodiet ipsos custodes ? - Plato

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Offline jia

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Re: Parents do join in!
« Reply #4 on: October 06, 2006, 06:44:30 AM »
Hi, I am a mother of a beta thalassemia major son. He is now 3 years old. He was adopted and it was unfortunate that there wasn't mandatory testing for thalassemia in South East Asia, and that he was not diagnosed until he was 11 months old. By that time, he HB was only 5.3. I can't express my feelings, and fears of losing him from the day of diagnosis to the day of 1st transfusion. It was a lucky escape. We feel blessed that he is alive and well today.

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Offline §ãJ¡Ð ساجد

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Re: Parents do join in!
« Reply #5 on: October 06, 2006, 07:54:35 AM »
Hello Jia,

Welcome to the site!

WOW! That is very nice of you to adopt a Thal. Child and love him unconditionally as if he was your own!

I salute you!

Please feel free to share your experiences and ask any question in the forum.

Take care, Peace!
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
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Offline jia

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Re: Parents do join in!
« Reply #6 on: October 07, 2006, 06:45:59 AM »
My entire family lives in Australia. My father was a citizen of Australia ( I use the past tense because he died of liver cancer earlier this year). My husband and I decided to adopt a little boy 3 years ago from country M, where we were originally from. Since then, we have been fighting the Australian Immigration for my son's residency visa. It was a long fight because he had thalassemia. The cost to the community would be too high, according to the government of Australia. Not only did we have to pay for all the medical costs while my son was still a non resident, we were told he would not be allowed to stay in Australia even if continue to pay all his medical fees. We were despaired and felt that if we were not welcomed, we would just have to leave. But then, what would happen to my folks here in Australia. So, we went on fighting, appeal after appeal. We finally won the appeal May this year, due to the fact that we ran a small business outfit which employs 28 people. I must say, our employees were getting quite worried for everybody's future by that time. Unfortunately, the day my son was given his residency, my father was diagnosed with cancer. He died 6 weeks later. The only consolation was that he went in peace, knowing I could remain in Australia and take care of my mother.

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Offline Deepak

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Parents do join in!
« Reply #7 on: October 22, 2006, 07:37:58 PM »
Hi All,

It was tough the day Pranita(my wife )and myself were informed about our 6 years old's thal major condition ( at that time Aanchal was 8 month). Except for a few sysmptoms like irritation, lack of hunger before transfusion, Aanchal ( my daugher) has been a STAR. Pranita has been so strong through out I thank God for this partnership, I am not sure whether I would have lasted so long if not for her!

Aanchal started speaking very early, infact when she was 4 she would know how to log into a computer and dial up MSN chat to chat with me at work. An amazing kid, we were able to get a great school for her where the teachers are so understanding. Aanchal's doctor Dr Revati raj has been a source of inspiration to us, the efforts she puts in educating those hundreds ( I am sure it is more) families who are not fortunate enough to afford filters,Kelfer or even frequent transfusions is truly amazing.

I am new to this group too, though I have been a member on the MSN forum. I would like to access this site as often as possible to get to know you all.

regards

Deepak

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Offline namitha

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Re: Parents do join in!
« Reply #8 on: October 23, 2006, 09:06:22 AM »
Hi Jia,

HATS OFF for adopting a thal child. I am going to use you as an example if you don't mind. Some people cannot even take proper care of their own kids who have thals.

I glad you won against the government.  :flowers Congrats and may you have all the strength.

Regards,
Namitha
You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.

Max Ehrmann's Desiderata

 

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