my new baby just diagnosed with thal major pls help

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Re: my new baby just diagnosed with thal major pls help
« Reply #30 on: November 07, 2008, 08:50:13 AM »
It was so heartning to know that you have overcome your grief . may god bless the child. If you don't mind let me advise u one thing on day of transfusion i get very upset cry a lot curse my self for condition of my daughter but in the end it's the smile on face ofmy daughter that help me forget everything ang gives a fresh zeal to fight out . My advise is if u feel like crying cry out curse ur self this would lighten u up and by end of day u'll also enjoy her smile
    Next mth I'm  taking her for HLA typing with her elder sister pl. pray for her that it matches perfectly. otherwise I'll have to go for stemcell purchase which in itself adds  up to the cost of treatment.right now I'm trying to raise around Rs1 milllion which is around 50K $. for her treatment and of which half I've managed to raise .God will certainly help me and my child.
                                       :biggrin :biggrin

                        i just wanted to thank u all for your input it has been so helpful . i appreciate each and every one of u for taking the time to look over my post,and taking the time to answer. you all have been more helpful then u will ever know, so heartning to
                              ANDY,  i just wanna thank u from the bottom of my heart for informing me about childrens memorial hospital!!!!the hospital i initially found out my daughters diagnosis at was so negative, they had no bedside manner, they were tellin me we will start transfusions at 4 months , she would be on the chelation pump until she was 2,they wanted her to go into surgery to get a port,and that she would have to get a liver biopsy every two and a half years , the doctor was getting frustrated with my questioning and i left that hospital devistated!
                        when u told me about childrens i immediatly looked into it they have a wonderful program, and wonderful staff of people who specailize in thal!!!!!.no port,no chilation pump,no set date for transfusions, when her level starts to drop we will begin the transfusions.when she is 2 she will begin oral chilation, no liver biopsys ever, they can messure the iron in the liver through mri, they were so informative and they also have genetic counseling so that me and my husband can have another baby, that will not carry thal , and at that time, they will beable to use the new babies cord blood to give ava what she is lacking , and hopefully cure her, i now strongly believe that my daughter will not live her whole life with this disease , they are doing so much research and i believe a cure is near.i left that hospital feeling great!!and i just want to thank u again , because with out your one little comment my daughter would have been so much worse off!!you are truly a life saver!! god bless u and thank u again!!!!!


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Offline avasmom

  • mom of a beutiful baby girl with thal major
  • *
  • 14
  • Gender: Female
Re: my new baby just diagnosed with thal major pls help
« Reply #31 on: November 24, 2008, 07:38:39 PM »
                                                         :biggrin :biggrin

          Nanuaru i hope that everything goes well and that there blood types match perfectly u and ur babies will be in my prayers. so nice to hear that people are out there willing to help people like me and u and the rest of these thalpals,i agree that god is looking over u and ur babies and that your issues will be solved within time.try to stay possitive and may all positive things come to u , happy holidays

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Offline Sharmin

  • *****
  • 4155
  • Gender: Female
  • Little A
Re: my new baby just diagnosed with thal major pls help
« Reply #32 on: November 28, 2008, 07:27:24 PM »
Avasmom,

I hope our beautiful little Ava is doing very well:)

Best,

Sharmin
Sharmin

 

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