Discussion Forums > Thalassemia Major

Dear MomofABabyThalMajor

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Zaini:
Dear MomofABabyThalMajor, :hugfriend

Welcome on the forum,i can understand your feelings and what you must be going through,be strong we are all here for you ,i know it's very hard to get used to every thing but now when i look   at my daughter i don't see any thal,i just see a healthy,active,vibrant and sharp child,she is brilliant with her studies and she got first position on her last sports day in school,You can see her winning pics in the gallery :).

Just believe in your son and never treat him any different,take good care of him and you'll see that he'll grow as good as any child and will live a full life  :hugfriend.

Zaini.

Annie:
hello MomofababyThalMajor,
welcome to the forum,I know what are you feeling..
but i want to tell you m a thal major,26 of Age and living a very healthy life..don't worry mam
we can deal with thal easily,
Thal major can live a very healthy and long life...they can do everything..
as little "A" Plays ice hockey isn't dat great?
don't loose hope..trust in GOD, he is thinking of us.
your son is going to live a very good life, never let him down..
 just give him proper chelation,medication..and you will see the positive result..
we all are with you,keep in touch and share your feelings with us
take good care
GOD BLESS YOU

Andy Battaglia:
Dear MomofABabyThalMajor,

I contacted Eileeen Scott of the Cooley's Anemia Foundation to make sure you are in good hands at your hospital. This is what she had to say.


--- Quote ---(Dr Quinn) Yes - he is great.  I actually went to his hospital, and it was terrific.
She will be in good hands.  He is on our medical advisory board, and Dallas
Childrens is one of our thalassemia treatment centers.  I would be more than
happy to speak to the parents, so please pass on my contact info if they are
interested. Also encourage them to get in touch with us so that we can add
them to the patient data so they will receive up to date info.  Thanks!
Eileen
--- End quote ---

Please contact Eileen at eileen.s@cooleysanemia.org  She would love to talk to you and help ease your concerns.

I can guarantee that you will be feeling much better once you understand more and have more contact with Dr Quinn. Thalassemia patients are living long full lives as long as they get proper treatment and your child will. I know it's a big shock to learn about thal but the shock will pass and the need to do what is right for your child will be what guides you. Please learn as much as you can from the information here. Knowledge is power and it will replace the fear that you now have. Why do I say this with such confidence? Because I have seen it over and over and it will happen. You are in good hands at your hospital and you will have a healthy child. Be confident and assured. I would not say this if it wasn't true. You will find all the support in the world from the great people at this site, so please accept our friendship.  :hugfriend

Sharmin:
Dear MomofABabyThalMajor,

I remember the pain that you are feeling, and it is natural to feel it.  One thing I can tell you from my experience is that I imagined life with thalassemia to be much more terrifying and difficult when he was first diagnosed then it really has been.  He is 10 years old now and I can honestly say that during these 10 years he has probably had less sick days (other than transfusions) than most of the kids in his class, he is as physically strong and intelligent as the other kids his age and all in all he is very normal.  There is nothing about this disease that prevents us as parents from enjoying anything that any other parent can enjoy.  Thalassemia kids walk, talk, play, get educated - and thanks to modern technology they can go to college, get married, have children and live a normal life span.  All of these things make the monthly pokes worth it.  Really, we don't think of transfusions as a hardship to endure anymore - he loves going to the hospital because he gets so much attention and he has mom all to himself for the day.  In fact, when he heard that there may be a cure for thalassemia he cried his eyes out because he likes his life the way that it is.  He said that he would miss the nurses and playing Wii at the hospital. 

During one of our follow up appointments, when little A was 6 years old we asked the thalassemia doctor - "Is this it?  The thalassemia thing?  Other than transfusions life is very normal and nothing is different about him".  The doctor chuckled and said "This really is it, thalassemia is not the monster it once was - it is just maintenance".  In fact, if you think about asthma, diabetes or epilepsy these diseases can happen to anyone - and they require maintenance just like thalassemia.  I learned a lot from a friend whose son has spina bifida - when my son began walking at 10 months of age she told me "See, I told you not to worry about him - look you see your son walking at 10 months of age - I have been waiting for 13 years and chances are I will never see him walk".    I remember this everytime I watch my son play a soccer game or score a goal in hockey - and I tell myself that the little poke he gets monthly or the chelation is worth the wonderful and healthy life he is able to live. 

I know that this will not make all of the feelings go away immediately, but over time I hope that it helps.  I know that we, as parents become depressed because we feel a loss for the normal life that we wanted for our child - but at the same time I want you to know that your child has not lost that "normal" life.  You will get through this initial shock at your own pace, but when you do we must remember that our children feed off of our attitudes and courage - if you begin to embrace the beautiful life and opportunity your child has despite this disease - he will embrace it too.  Your child will amaze you have faith in him - and have faith that he will live a healthy, normal life and life span. 

Wishing you all the best - and we are all here to guide you in helping raise a healthy thalassemia child together.  The advice that Andy has given you and the center he has told you about will make it all possible. 

Best of luck and please keep posting so we can help you through the emotions that you need to go through right now,

Sharmin

MomofABabyThalMajor:
I cannot express my thanks to all of you for your kind words. It really makes me think and believe that with time everything will fall in place in my life and my baby will be fine, though he has many hardships but he will overcome them,,,,,thank you, my friends.

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