Another Thal(Major) Patient's Story - Successful BMT - HLA Match with Sister

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Offline Narendra

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Hello Everyone,

I have another Success story to share. I hope this shows us NOT loosing HOPE helps us.

I met a family who had lost their 1st son due to Thal(Major) at a very young age(may be a year or so).
They had 2 daughters and another son. The son had Thal(Major). This is a family whose household income was about $45/month. After finding out that his son has Thal(Major) and that he needs blood transfusion, the family moved to Mumbai(where there are more blood transfusion facilities). They stayed here for 4 years. Due to the busy life in Mumbai, this family then moved closer to their relatives in Surat, Gujarat. In 1997 they heard about Bone Marrow Transplant as an option for their son. They matched the HLA with the elder sister, but that was NOT a match. They got their other daughter's HLA to match and luckily there was a 100% match. For a person who earns only about $45/month to get the Bone Marrow Transplant was just a dream, but to get their son out of the issues of Transfusions, this family gambled. They started asking for help from associations and with trust in God, they kept on moving towards the BMT dream in Vellore, Tamilnadu, India. In 1999, they somehow(donations etc) got the funds and got the BMT done but due to a slow dose(9.4 X 10exp8 nucleated cells.Kg in 520 ml of marrow) of the medicine, the BMT operation was a failure. Whatever hopes they had, went down to earth. They came back home.

After coming back home and hearing about the failure in BMT, the support group got together and gave strength to the family. They also asked them if they would like to try for another BMT with a standard dose(instead of the slow dose in the first BMT). After talking with the doctor's they found another ray of hope and in April 2000, they went back to Vellore to get the Bone Marrow Transplant done. With Trust in God and hope for a cure this family has been waiting for more than 15 years. Luckily - the second transplant was 100% SUCCESS!!

I have met this boy and he is totally normal. He goes to school and his performance is high. His serum ferritin level is still high at around 3000(It was 12500). With regular Desferal vials everyday he is getting his Iron down. This also costs around Rs 25000 a month(approx. $570). For a family to earn his living while earning about $200/month this is a great challenge. But, looking at the trust in God of this family and the medical advancement, I see a ray of hope in all our lives(Note:- When their son was diagonised with Thal{Major} - they did NOT know that Bone Marrow is going to cure their son. Similarly, there might be something which is going to cure us and our family members). Just, Keep the faith and Trust in God
« Last Edit: November 27, 2012, 09:28:50 PM by Narendra »

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Offline Danielle

  • Beta Thal Major
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  • Gender: Female
Wow, what a wonderful story, with a great ending! I'm so happy for that family, and I pray to God that each and every one of us can see that day when a cure comes our way.  That will truly be a wonderful day.  I will never give up hope.   :grin

Thank you for posting that for us, nb!   :biggrin

 

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