Singapore Scientific Programme Schedule

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Offline Andy Battaglia

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Re: Singapore Scientific Programme Schedule
« Reply #135 on: October 21, 2008, 08:55:00 PM »
I'll take a look at the test results after work. I am very backed up at work and won't have time until tonight.
Andy

All we are saying is give thals a chance.

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Offline aysam

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Re: Singapore Scientific Programme Schedule
« Reply #136 on: October 21, 2008, 08:59:28 PM »
ok
what is your email i will send them to you if you like
but plesae be honest with me my eyes will be glued the the computer screen all day waitting on you i need to knwo the truth you know what i just happend to look at his results last week and noticed almost everything is POSITIVE AND ALMOST EVERYTHING SAYS H NEXT TO IT this is why i posted the results here
on the web site i wasnt worryed i just had a feeling there are many things doctors are not teling me and dont explaine anything so thankyou sharmin
i will be waitting on you
, 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 aysam

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Re: Singapore Scientific Programme Schedule
« Reply #137 on: October 21, 2008, 09:04:32 PM »
thankyou andy
thankyou sharmin
thankyou everyone maybe i have put to much stress on you guys
i am sorry i dont meen to do this but i belive you guys know better than the doctors  :rolleyes
and you will tell me the truth :hugfriend and at least tell me as for my doctors they didnt even say anything about his results at all
, 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 Sharmin

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Re: Singapore Scientific Programme Schedule
« Reply #138 on: October 21, 2008, 09:21:34 PM »
Hi Mariam,

Thank you for your confidence in me, however I am not an expert on these particular issues.  Andy is the expert, perhaps when he has a chance to look at your results tonight he can give you more concrete information.  In the meantime the major thalassemia centers can also help you. 

Can you compile your results together in an easy to read fashion and then put them into an email?  If so then I can try to get you some other contacts as well. 

I don't think that you child is in immediate risk, but I am not qualified to make that call my friend.  Indeed, his numbers are not in the normal range and he needs to have a professional interpret his results. 

I will be on the look out for you and seeking info as best as I can,

Sharmin
Sharmin

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Offline Sharmin

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Re: Singapore Scientific Programme Schedule
« Reply #139 on: October 21, 2008, 09:30:32 PM »
Maraim,

I am a mom too my dear, don't apologize for feeling scared and needing answers.  I know the desperation that you are feeling and trust me I am giving this my all - I wish that I could easily give you answers, but this is a little beyond my scope so it is taking me longer.  I don't have definitive answers for you.  But we are not going to give up on you or little Aysam.  Let me know when you have compiled your results in a single organized document, I will see what I can do for you. 

We are all in the same boat, and we are in this together,

Sharmin
Sharmin

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Offline aysam

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Re: Singapore Scientific Programme Schedule
« Reply #140 on: October 21, 2008, 09:33:46 PM »
sharmin  :hugfriend
, 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 Sharmin

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Re: Singapore Scientific Programme Schedule
« Reply #141 on: October 21, 2008, 09:42:21 PM »
Mariam,
please find my email address in PM i have just sent you.
« Last Edit: October 21, 2008, 11:31:56 PM by sharmin »
Sharmin

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Offline Sharmin

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Re: Singapore Scientific Programme Schedule
« Reply #142 on: October 22, 2008, 01:55:23 AM »
Mariam,

We are still trying to get you answers.  Your son's health is very important to us - we hope to hear back from the doctor.  In the meantime when Andy is available he will look at your results as well.  Aysam is very precious to us all.

Sharmin
Sharmin

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Offline Smurfette

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Re: Singapore Scientific Programme Schedule
« Reply #143 on: October 22, 2008, 11:53:30 AM »
OK!!!

Sorry to reply late to this..but Aysam? Who is your childs doctor and which hospital do you go to in sydney australia..

I just read most of the posts..

Aysam patients know better than doctors and their parents... Sorry if I offend any parent in here... but thats not my intention..

Only a Thal patient knows what is going on with them...even some doctors dont know what is going on with them...


Please email me aysam and let me know....I might be able to do something...What language do you speak?

Sharmin I hope this helps  :wink

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Offline Sharmin

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Re: Singapore Scientific Programme Schedule
« Reply #144 on: October 22, 2008, 01:23:27 PM »
Smurfette,

Thank you very much!  You're the best  :hugfriend

Sharmin
Sharmin

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Offline Smurfette

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Re: Singapore Scientific Programme Schedule
« Reply #145 on: October 23, 2008, 10:23:25 AM »
Aww Sharmin

I have contacted Mariam, we spoke and I gave her some advice to seek a second opinion from another more specialised Haem Thal doctor...

She told me that she has an appoint in Nov sometime..

I will meet up with her one day soon too...So we can talk face to face...

Its just a matter of time..

 :hugfriend

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Offline Sharmin

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Re: Singapore Scientific Programme Schedule
« Reply #146 on: October 26, 2008, 06:19:03 AM »
Mariam,

How is our little Aysam?  I am so glad that Smurfette has gotten you connected proper care in your area.  The information she gives you is the most valuable because she has been receiving care there for years - very successfully.  Thalassemia is a chronic disease requiring lifetime management.  Properly managed, thalassemia does not have to cause any major problems.  This is the best thing that you can do for little Aysam.  We are always here to encourage you and to answer any questions you may have to the best of our ability. 

Please give our love to the little cutie:) 

Smurfette, thank you again - Mariam and Aysam will benefit greatly from the information that you have provided for them.

Sharmin
Sharmin

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Offline aysam

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Re: Singapore Scientific Programme Schedule
« Reply #147 on: October 26, 2008, 10:32:40 AM »
                                                           you both are the best

yes for sure we will meet one day i have to meet you
you give me strenth Smurfette &
sharmin you have the best heart
, 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 Smurfette

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  • Me and my Goddaughter
Re: Singapore Scientific Programme Schedule
« Reply #148 on: October 26, 2008, 11:52:43 AM »
 :hugfriend To the both of you!!!

You guys are too much..you both have made me blush...

I only want what is best for your son and he deserves the best treatment out there..

We will meet up for sure...

Take care..

This new pic was taken today..its a recent pic of me... :biggrin

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Offline Manal

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Re: Singapore Scientific Programme Schedule
« Reply #149 on: October 26, 2008, 04:41:04 PM »
Smurfette, you are so pretty in this picture, I like it so much :wink. Your Goddaughter too is beautiful

manal

 

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