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55248 Posts in 5898 Topics by 6190 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: Bone Marrow Transplant of Shaheera Faheem  (Read 76989 times)
Shaheera
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Shaheera


« Reply #75 on: May 10, 2013, 01:06:14 AM »

Day + 46

So far there is no major issue, my daughter's HG is constant from last one month. I am back to job in dubai and my wife still need to live in Pakistan due to weekly follow up for few months.

Thanks for the prayers everyone.


Regards
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Faheem Sultan - Father of Shaheera
Pratik
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« Reply #76 on: May 10, 2013, 11:17:41 AM »

Day + 46

So far there is no major issue, my daughter's HG is constant from last one month. I am back to job in dubai and my wife still need to live in Pakistan due to weekly follow up for few months.

Thanks for the prayers everyone.


Regards
I'm very happy for baby Shaheera.

She now has a brilliant future ahead!

Wish you and your family a best health!

I hope in future, very soon, other people will greet me and many others the same if gene therapy hits the right spot.

-P.
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Every child is special.
Shaheera
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Shaheera


« Reply #77 on: July 12, 2013, 12:11:46 PM »

Day +109

Doctor allowed my daughter and wife to visit Dubai for 1 month. They will stay for few weeks for visa formalities.

Her immunity is low due to having immunosuppressant which will continue up to one year. No transfusion after transplant.

Thank for prays.


Regards
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Faheem Sultan - Father of Shaheera
catchR
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« Reply #78 on: July 15, 2013, 01:36:47 AM »

Wonderful news, that Baby Shaheera is doing well!!!

All the best Shaheera....
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Shaheera
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Shaheera


« Reply #79 on: October 18, 2013, 09:23:48 AM »

Its been 7 months post bone marrow transplant for my daughter and she is managing quite well. She is transfusion independent from last 200 days eventhough there was fluctuation in HG level and that was managed with tapering of Cyclosporine dosage. Medicines will continue up to one and then the vaccination process will start. Her transplant physician monitoring reports monthly basis.

Met with two families here in dubai and both have their first babies diagnosed thalassemia major. Its very painful.

Its journey over a long distance. 
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Faheem Sultan - Father of Shaheera
Canadian_Family
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« Reply #80 on: October 18, 2013, 09:25:25 AM »

All is good. Glad to hear.
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Regards.
Luana
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« Reply #81 on: October 18, 2013, 11:04:09 AM »

Very glad that your daughter is doing well!  Best wishes &  good luck for a healthy future for all your family but especially for your little daughter
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Andy Battaglia
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Will thal rule you or will you rule thal?


« Reply #82 on: October 18, 2013, 11:14:30 AM »

I'm happy to hear that your daughter is doing well post BMT. That is good news.

It is sad that unintended thal births continue to occur in more developed nations, and especially in a nation that easily has the money to run awareness and prevention programs. With the huge amount of immigrants in the UAE, awareness and prevention should be a top priority.
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Andy

All we are saying is give thals a chance.
catchR
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« Reply #83 on: November 25, 2013, 10:31:02 PM »

Really happy to hear that Shaheera no longer needs transfusion and is doing well. I have been following your posts since the start and its really hearting to come across success stories like yours and also as a parent see a child free from Thal.....

Best Wishes and God Bless!!

Totally agree with Andy that all the Nations should have good awareness / prevention programs...especially when simple and cheap tests like HbLC can easily determine the risk.
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Shaheera
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Shaheera


« Reply #84 on: May 20, 2014, 10:23:35 PM »

It’s very difficult for me to write this that my daughter Shaheera’s bone marrow transplant become unsuccessful post 11 months of transplant. During last 11 months her hemoglobin was stable at 9 but at once she got high fever and hemoglobin dropped to 6 and she got transfused this Feb 2014 (Last Transfusion Feb 2013)
Test for donor chimerism repeated few days before and it came <10% so it means she become thalassemia again. Transplant physician advised for re transplant after sometime.

Thank you everyone for your love and prays for my only chid.
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Faheem Sultan - Father of Shaheera
catchR
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« Reply #85 on: May 21, 2014, 08:51:16 AM »

Extremely sorry for Shaheera....it must be so difficult for you and your family, being so close.

Hope things improve and Shaheera soon has successful a graft. God Bless!
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Sharmin
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Little A


« Reply #86 on: May 21, 2014, 09:58:41 AM »

I am sorry to hear that the transplant failed.  I hope that the next attempt is successful.  Wishing your daughter a happy and health future.
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Sharmin
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« Reply #87 on: May 21, 2014, 02:36:12 PM »

Don’t know what to say, re-transplant is an option. It depends how desperate you are. Bone Marrow Transplant certainly is an option but is not a perfect cure for most. The reason for imperfection is the Chemotherapy which effects fertility and other organs of the body. The baby has already gone through it one time, not sure what toll her body took with the first transplant. It is a risky procedure and some choose not to go this route (even they have the resources/match available) because of the damage and risk.

In the end, Agreed, it is the only available cure at this moment. Should people refrain from Bone Marrow as other treatments are in the pipeline. The management of Thalassemia has improved so much that patients are living close to normal lives. Should people wait for next five-ten years and hope for gene therapy and other techniques. There are promising trials going on while we speak. This is a debate every parent or patient should have before taking any decision.

It will be interested to see how other members think.
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Regards.
Bostonian_04
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« Reply #88 on: May 21, 2014, 02:45:06 PM »

I am sorry to hear that the transplant was not successful. But the good part is she is Ok and she can still live a healthy , fulfilling life with the current treatments available. whatever you decide going forward, please remember there are lots and lots of kids and adults who are managing thalassemia and life using the current treatment of blood transfusion and chelation.
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Quis custodiet ipsos custodes ? - Plato
Andy Battaglia
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Will thal rule you or will you rule thal?


« Reply #89 on: May 21, 2014, 02:56:01 PM »

I would also advise that you go slowly deciding on a second BMT. One recent case reported here did not end well as the child died. In another case a few years back, our member's son had a successful second transplant but only survived because he had the best BMT doctors on earth (Dr Lucarelli and Dr Sodani from Italy). The child went through two excruciating years after the second BMT before he was out of danger. Those two years were very rough, as the boy slipped into a coma on several occasions. I would ask for stats on the success rate of second BMT's before making any decision.

I agree with Canadian Family. With advancements in treatment, life with thal is nowhere as bad as it once was. Thals can have fairly normal lives and treatment continues to improve.
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Andy

All we are saying is give thals a chance.
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