Hi

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Offline Dori

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Re: Hi
« Reply #15 on: October 27, 2008, 06:17:02 PM »
MEDIA...this is the key word, if you reach the media, we can have funds for a cure.
Please check this link

http://www.thalassemiapatientsandfriends.com/index.php?topic=2194.0

manal

Yes, maybe you can contact the UK Thalassemia Foundation?
There is a thalassemia clinic in London and the foundation is also in Birmingham.
I met them last year and they really touched me.

I feel sorry for the lost of your children.

Good luck with your plan, and where on facebook can we find you?

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Offline aysam

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Re: Hi
« Reply #16 on: October 28, 2008, 01:57:31 PM »
take a look at this
www.youtube.com
baby stops breathing while asleep
type that in its my son
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline sarah

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hello everybody
« Reply #17 on: October 28, 2008, 10:15:45 PM »
hii all .my name is sarah im 22 n im currently living in UK coz im married here ...n b4 dat i was in my Pakistan n i never knew that im a carrier until i was pregnent  then my hubby got tested , he was also a carrier but it was too late for a cvs test .we left every thing on Allah but Allah wanted to test us n my son was born having thallassaemia major.he had his first transfusion at 6 months  but now mashallah v have done his bone marrow transplant 3 months ago n alhumdolillah it turned out to be so well..his father was the donor his treatment is still going on...im so glad to c this website n im really happy that so much effort is going on for our asian community bcoz still we asian need so much awareness n information abt this dieseas .....n if ny one has lost their child may Allah give them courage n they can still make a big difference by creating awareness among oder ppl .thumbs up for u lot 

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Offline Andy Battaglia

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Re: Hi
« Reply #18 on: October 28, 2008, 11:00:06 PM »
Hi Sarah and welcome,

Where was the bone marrow transplant done and who were the doctors? I have heard of the mother being the donor for BMT but never heard of the father as a donor. I would like to hear more.

Yes, we do give much attention to Asians here and the reason is because it has been much needed. We have members from all over the world, but the needs of Asians have been great and we do make a special focus on helping anyone who is not getting answers. The international thalassemia organization has had its past two thal conferences in Asian countries in attempts to highlight the needs of Asians, but their day to day efforts are somewhat lacking. We try to fill that void so that no one on earth ever has to feel alone in their struggles with thalassemia. One of the board members of TIF and CAF who is a former president of both organizations, was told at the recent Singapore conference by one of our members that I am the only one who has successfully bridged the gap between the East and the West in the world of thalassemia. This would not have been possible if the Asians had not embraced me right from the start. For me it has been very fulfilling to watch as the Asian countries come to grips with thalassemia and great strides are made. The changes in some countries like Pakistan have been immense is just the past 5 years. There is much still to do but it is very encouraging to see the progress being made to bring care to more people constantly. TIF may be dominated by western thinking but at our group, there are no boundaries. All are welcome and all will be helped in any way that we can.
Andy

All we are saying is give thals a chance.

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Offline sarah

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Re: Hi
« Reply #19 on: October 28, 2008, 11:14:07 PM »
hii the BMT was done in England, i live in birmingham n the hospital is birmingham children hospital  i must say it is really good.when reyyan was 8 months old sm blood was taken from me n my husband  from that v found out that my husband is the full match.so it took us about a year to decide n then v left every thing on fate...so by grace of Allah my son reyyan did really well mashallah he is 2 years old now.
  In UK der r so many organizations supporting the ppl hoo have thallassaemia ..but unfortunately i havent seen so much of this in our asian countries bcoz i didnt even heard taht this dieseas can be really serious b4 i came over here ..so much effort is needed to make ppl aware of this blood disorder.I am always ready to help in any kind of support.Its really amazing the way u lot r making difference in ppls life..

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Offline Andy Battaglia

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Re: Hi
« Reply #20 on: October 29, 2008, 12:16:17 AM »
It's amazing that the father was a perfect match. I am very happy for your family. We have some other members whose children have also had BMT and some members who have gone through it themselves. It's encouraging to hear the success stories and to see the success rates climbing. In spite of the cost, BMT is becoming a more attractive option. The long term health care costs of a thalassemic will greatly outweigh the cost of BMT and aftercare, so if the cost can be worked out, it should not be an influence on the decision to have a BMT. With success rates topping 90% in Italy, there is much reason to expect higher success rates around the world. While we wait for gene therapy trials to really get moving. BMT is becoming an option that more people should explore.

I look forward to hearing reports on your son as time passes.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: Hi
« Reply #21 on: October 29, 2008, 03:51:01 AM »
Sarah,

Welcome to the site.  I am glad to hear about your son doing well after BMT.  It is nice to hear success stories about BMT. 

Sharmin  :hugfriend
Sharmin

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Offline Manal

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Re: Hi
« Reply #22 on: October 29, 2008, 04:21:57 AM »
Hi Sarah and welcome to the site :welcomewagon

Are you and your husband related??? Could this be the reason for a full match?

manal

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Offline Lyanne

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Re: Hi
« Reply #23 on: October 29, 2008, 04:34:59 AM »


    hello! welcome to the forum/family..... Glad to hear your son is doing well.... hope you always update us with your son's development......  :hugfriend :welcomewagon :welcomewagon :welcomewagon
LYANNE :yahoo

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Offline nice friend

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Re: Hi
« Reply #24 on: October 29, 2008, 09:11:36 AM »
Hi Sarah ,
Welcome to the Community , . its Nice to hear about your Son's sucessful BMT .. its a super news for all thals about another successful BMT .. thanx for sharing this with us ...  it seems like a ray of hope for many other thals ..
Quote
I look forward to hearing reports on your son as time passes.
Mee too and i hope all forum members as well ....

Best Regards
Take Care
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Zaini

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Re: Hi
« Reply #25 on: October 29, 2008, 11:30:29 AM »
Hi Sarah,

Welcome on the forum,I am really happy for little Rayyan,lots of hugs and kisses for him.

Manal,

I am sure they must be related,as cousin marriages are so common in Pakistan.

Zaini.
^*^Xaini^*^

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Offline sarah

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Re: Hi
« Reply #26 on: October 29, 2008, 12:24:49 PM »
ye sme n my husband r related but he is my second cusin as in my mums cousin not mine....n im related to hum from my mums side....
my son is doing quite well mashallah.His T cells r bit low so they r still giving him infection control medicine called vigam. first it  was every week but now it is every oder week..Doctor says that his graph is going on well n up n down is very normal.n in UK the NHS pays for the BMT so it didnt cost us a single penny to have his BMT done all was from the GOVT n they did really well.
 I think it is very necessary to create awareness among ppl bcoz it is still an alien concept to many.
i must say that im so delighted to c this website n this forum is sooo amazing
hats off
 

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Offline Dori

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Re: Hi
« Reply #27 on: October 31, 2008, 10:00:01 AM »
Welcome to the group, and I am glad your're son had a succesful bmt.
Btw I met people of the Thal organisation from Birmingham last year. Great people :D

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Offline shy

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Re: Hi
« Reply #28 on: October 31, 2008, 03:24:43 PM »
Update on my progress.

Since speaking out about thal and wanting to help others with it - so far i haven't had much luck with the responses so far.  But this weekend i am in talks with other people to possibly organise a dinner n dance function and all money raised will go to the thal society uk in southgate.

I am going to talk to the hospital and see if they are willing to do blood tests for people who want their blood taken.  Plus going to get lots of info about it and spread the word.  Lets see how it goes and we'll see what happens - will update on Monday .

Speak Soon

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Offline shy

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Re: Hi
« Reply #29 on: October 31, 2008, 03:31:13 PM »
Hi PearTree Girl,

Thankyou for your words and hopefully i can help make a difference - I have been in touch with uk thal society in Southgate and all very nice people -
I am going to contact BBC until i get some sort of response

Will let you know my progress on Monday

 

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