How do parents feel about raising a Thal child?

OOOOOOH THAT TOO DEEP SWEET ... NO NEED TO ADD MORE SWEET 
                      KHALIFA
            ONE FOR ALL AND ALL FOR ONE

OMG!!!

It's wonderfull,can't explain how much,it captured my heart.

ZAINI.

Initial shock,
Anger,resentment,
Acceptance,understanding...
Run through past back to present

Tears change
Courage and strength appear,
Seeing our child....
Life seems dear

Treatment begins
Hopes float,
What the future holds....
What history wrote....

Transfusions done...
Chelation begins...
No more talks of defeat....
Life, we are in!

Our son grows well.....
We find this site....
Life didnt seem okay
But now things begin to get right...

Love from all
Support and courage too....
We dream of tomorrow
Paint lovely pictures too...

Research ongoing...
Prayers help as well...
What we feel and experience
Out our hearts we can tell...

May we all survive...
All of life and its ordeals...
Its not that bad after all
Though not too fair a deal!

Didnt realise my old reply was half posted....anyways have a new one now!Hope you like it too....Dont really log in much but will try to write something whenever I do!
Take care all......
Nice to vent out words that reach so many hearts!
Madhavi

Madhavi,

That was awesome, keep posting.

ZAINI.

HI Manoj..

 That was LOVELY...I think I spoke to you over the phone a few months back... and I hope that you are learning more about Thal.. and its management..

 Acceptance is already half the work done.. the rest is easy.. .. so keep smiling.. each one comes with his or her destiny.. and with a certain purpose.. and we do not have any control over that.. except.. do what is available to us.. so that we can say.. "I did my best".. and when the best is done.. the results will show..
Your son is still very very young.. and I am sure he will get more and more options of keeping himself well and healthy as the years pass by.. and will lead a fantastic and fruitful life..

Keep in touch!

Shikha Mitra

Very nice Poem
LOVE it!!

Yeah Shikha,
You had spoken to Manoj a few months back....and it really helped us a lot.
It is nice to find hope,courage and whatever is the magic that is needed to bond us all together....
Take care all.....
Madhavi

Hi all im thal mother.i was quite depres while reading exp.of all.pl answer my question.its my request 2 all of u so rep me.i always think abt my 6yrs old rutuja nd always came 2 conclusion dat c wil go 4 stem cell transplant while i dont have any 6/6 match donor.i think 4 her as she suffer frm all painful life  i shld go 4 transpkant wd 4/6 match which i got.while lastly she cure or nt.i cant have exjade in india.im so depres at the time of poking 4 desferal.wot can i do 4 her easier life.can any body tel me frm where in india i purchase exjade tablet. Have a nice time.im so proud of rutuja as c is gud nd brilient girl nd accept what god do wd her.c is brave girl stil i want some fear .ok.

 Hi rutuja2000,
I am an 18 yr old thal patient and we (my parents and I) grew up in a small country with a lot of problems- having to give blood to get blood, shortage in medication etc and worse of all children dying. It was very depressing and my mother was convinced that the best option for me was a transplant.

From the day I was diagnosed my mother insisted that she would do anything possible and tried in vain to get pregnant a second time. This included travelling to England to have a IVF treatment just to get a match. When that didnt work she even went to Italy several times to beg Professor lucarelli to do the mismatched transplant and contacted doctors internationally to try and have a child with a surrogate mother. All this just for me.

Nothing worked though and we ended up leaving our home and moving countries just to ensure that my treatment was better. I have been on combination therapy- ferriprox and desferal and its the best that I have ever been. Life has been different for us without everyone but at least I have benefitted by having some of the best in the thalassaemia field look after me.

I know how hard it must be for you to have to stick your child everyday but I see that you also have other chelators available. there is also a person in India whom I was fortunate to meet once before who would have gone through it all as well. She is very involved in thalassaemia and is always willing to help. Her name is Mrs Shobha Tuli and she is attached to the Thalassaemia Foundation in India.

Please make sure that your child gets chelated. Its the best that you can do for her. I can tell you that my condition together with the people who have supported me have made me strong.

best of luck
roanna

Hi all im thal mother.i was quite depres while reading exp.of all.pl answer my question.its my request 2 all of u so rep me.i always think abt my 6yrs old rutuja nd always came 2 conclusion dat c wil go 4 stem cell transplant while i dont have any 6/6 match donor.i think 4 her as she suffer frm all painful life  i shld go 4 transpkant wd 4/6 match which i got.while lastly she cure or nt.i cant have exjade in india.im so depres at the time of poking 4 desferal.wot can i do 4 her easier life.can any body tel me frm where in india i purchase exjade tablet. Have a nice time.im so proud of rutuja as c is gud nd brilient girl nd accept what god do wd her.c is brave girl stil i want some fear .ok.

Hello rutuja2000,

Have you thought of Kelfer? It is available in India and a less painful chelator. Also, studies have shown it is a better at removing Iron from the heart. Her life would be much much easier and it would be less painful for you too.

Also, I think Unrelated BMT for Thalassemia is NOT done as of now in India. The reason by BMT expert Dr. Chandy --> Thalassemia is manageble disorder. If someone is sure to die, they can go for Unrelated BMT. That statement means Thals can live healthier and longer if they follow the optimal treatment.

I think you just think and see that there are thals in their 40s and 50s and some have married, some have their own biological children. Future is bright, do NOT keep thinking about the negative and I think all will be well