Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: Ambika on July 09, 2009, 11:15:11 AM
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Dear all
Ambika is back A good new is that Dr. Mammen chandy has given final date for her bone marrow transplant ie. 1st Aug 2009 . Everything is now final according to hime both donor and patient are healthy and AMbika is in class I category and her chances of success are 85%.
My request to you all is that Please Pray for her that she get from this successful.
One more request please help us financially also becuase total cost of BMT 12,00000 the cost estimation that have given till now we have only Rs 4,00000 . So I request you My friends
to Please help us So that One more thal AMbika who is just 2.5 years old can lead normal life like any other .
Attaching Ambika latest photo
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Hi,
Your daughter looks happy and healthy,i hope you have weighed the pros and cons of a BMT,I hope doctors have informed you about what it would be like.
Best of luck for your little angel. :goodluck
Zaini.
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HI ,
I shall definitely pray for your daughter,Ambika.
By the way you have mentioned BMT cost at CMC as Rs.12,00,000.
Did you get the estimation for 1 child or two children.
As far as i know the cost of BMT at CMC vellore is Rs.6,00,000 with Rs.2,00,000 in Buffer.
So total cost should be Rs,8,00,000.
Kindly keep us updated with your daughter's progress post TRANSPLANT.
GOOD LUCK TO YOU AND YOUR FAMILY.
GOD BLESS YOU AND YOUR FAMILY.
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Dear
They have give us the estimate i.e. Rs. 800000 and in case of complications Rs. 400000 more to keep
IF any one know any of the agency who can help us in this regard please help us
We can even give you the copies of estimates that they given to us officially .
My no is 9811971982
regards
Ambika
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Hello,
I wanted to ask if you have any idea how to get family and friends up to date? I know a wonderful thing for that. You can start your own page (blog) at www.carepages.com
it's an American initiative, but it's for everyone in the world.
There you can also search on words and find other families to deal with this and to find support to each other.
Just a thought! I have no other connection with this except that a follow around 25 pages.
What ever you decided, I hope you can get us up to date.
All the best, Dore
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Dear Ambika,
I pray that everything will go well with your daughter. As Zaini said, I hope that you have made this decision after weighing all of your information. Our thoughts and prayers are with you, please keep us posted about her progress throughout the procedure.
Best wishes,
Sharmin
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Hi
I was thinking of both Ambika and Mohanish, as both of you were planning a bmt around august. I pray that things go well for both the little kids.
maha
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Sub: Grant of financial assistance for taking medical treatment.
Dear Sir/Madam,
I, Mr. Ajinkya Nahar, from Pune, request you to grant financial assistance for Bone Marrow Transplant treatment for my baby daughter Ms. Anushree Ajinkya Nahar as she is suffering from Thalassemia Major disease which is a genetic blood disorder. The Bone Marrow Transplant cost would be approx. Rs. 10,00,000/- (Rupees Ten lakh).
I can provide the copy of detailed certificate/estimate given by the doctor, from the Grant Medical Foundation, Sasson Road, Pune-411001 where the transplant is planned.
I kindly request you to please provide the needful financial help.
Thanking you,
Yours faithfully,
Ajinkya Nahar
(contact email - ajinkyanahar@gmail.com
contact mobile - 9370147208 )
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We are not a financial aid group. I wish you well but we can barely get enough donations to pay our annual website fees.
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Dear friends,
I will like to inform you that the Bone Marrow Transplant admission / process will start on 15 Jan 2011.
The cheque/dd for donation/help should be sent in the name of Grant Medical Foundation, Pune, Reg No / Ac No. - 1150012 (which is the hospital patient reg no.. for deposit money..)
Or following are the bank account details where you can trasnfer money online -
NAME: ANUSHREE AJINKYA NAHAR
BANK NAME: HDFC Bank LTD.
SAVINGS ACCOUNT NO.: 01851460003560
BRANCH: PUNE-NIGDI
BRANCH ADDRESS - PLOT NO 1, SECTOR 27A, PRADHIKARAN, NIGDI,PUNE-411044,MAHARASHTRA
IFSC code: HDFC0000185
MICR CODE: 411240010
SWIFT CODE: HDFCINBBXXX
Thank you in advance.
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Dear Ajinkyanahar,
Wish you all the best for the procedure....
Our best wishes are always with you....
Regards,
Madhavi
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i have a baby 10year old boy suffering from t/major blood transfussion start from after 8 month of his bon now i can discuss to bonmarrow transplant of our baby can you guide me where in india his treatment 100% posssiable or what is the total cost today & any orgnigation donate or sponer the 75% cost of bonmarrow.advise us urgently please thanks in advance
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Hemant,
Thalassemia is not as fatal as it used to be. There has been tremendous advances in the management of Thalassemia and Thals have crossed the age of 50 and I even read the story of a thal reaching 60.
In response to your question, there are multiple centers in India that do BMT and the cost/success ratio (as anyone would guess) is different for each case. The 1st step towards BMT is to find a matching donor. CMC Vellore is one center I know where a lot of BMT have been done. Although, the guru of BMT at CMC has left the hospital and moved to Tata Medical Center. Regarding the cost breakdown - it is roughly around 12-15 lac rupees but again with different cases, there are changes in the cost.
Here are few links that will help you get some information on the basics of BMT.
From : http://www.thalassemia.com/bmt_2.html
What is involved in obtaining a bone marrow transplant for thalassemia major?
The biggest obstacle is finding the donor for the transplantation. Since beta thalassemia major is no longer considered a fatal disease, criteria for donation differs from the criteria for BMT for a patient with a fatal disease such as cancer. Usually a patient suffering from cancer is given very toxic chemotherapy to kill the cancer cells and then is "rescued" from the chemotherapy with a bone marrow transplant. In the case of thalassemia, the goal of the chemotherapy is to remove most or all of the blood forming cells (stem cells) from the recipient and replace them with donor stem cells in order to repopulate the bone marrow space and make new, normal blood cells. In a cancer patient, the 'best' (genotypic) match is used for the transplant. In a b thalassemia major patient, the match must be the 'perfect' (HLA-identical) match. The closest perfect match is usually a sibling who has the same antigenic makeup (is HLA identical to the recipient) as the individual who has thalassemia. There is only a one in four chance a sibling will have the required immunologic criteria for a bone marrow donation. There are many children who have thalassemia who have no siblings or no siblings who are HLA-identical for donation.
Generally speaking, the younger the recipient, the more optimistic the outcome. The Lucarelli Staging System is based on the amount of liver damage sustained as a consequence of iron overload from chronic transfusion therapy and the adequacy of Desferal chelation therapy. The staging includes evaluations of liver size, the schedule and compliance of desferrioxamine therapy, and liver biopsy (in children over 3 years) to determine whether or not there has been microscopic liver damage.
Risks of BMT and CBT : http://www.thalassemiapatientsandfriends.com/index.php/topic,2919.0
Transplant Experience of a family : http://www.thalassemiapatientsandfriends.com/index.php/topic,3125.0
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how many risk percentage in bonmarrow out of 100% & ist is total time spend in this process like one month two month six month or one year
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please guide me
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Hemant,
Your doctor will evaluate your son, and let you know which "category" or level he falls into based on:
1. Age of the patient
2. Number of units transfused, which is in any case linked to the age
3. Iron levels in the body
4. Major Organ health
5. Splenectomy - done or not
The above is assuming that you have a HLA-matched donor.
Current data of BMTs done in India indicates that 94% of Category-1 patients have a successful recovery. The success rates drop off quite sharply for Category 2/3/4 patients.
I would strongly advise against a BMT if your son is not a category-1 candidate.
Cheers
Poirot
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my son age is 10 year blood transfussion onces in a month after 22 days max blood in body is 8 to 9 in the last days thalassemia major beta iron is under control because we use destrol in regular basis
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My brother is 25 years old. So in which category he comes. He has to get 2 units of blood every 3-weeks.
Can we go for BMT
Thanks
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Shama - Refer to the post : http://www.thalassemiapatientsandfriends.com/index.php/topic,3525 which talks about BMT in adults
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The cost of Rs. 1200000 is minimum. In some cases, it goes up to 50 lacs. So I would suggest you to arrange for at least 20 lacs. All the best....