Hello, my darlings!

Hello everyone,

Firstly, I would like to laud Emommy for adopting thal major babies. Whenever I hear of couples that knowingly adopted thal major babies, it touches my heart. The world is a better place for people like you,  all of you.   

Been a long time since I visited the site.
 My dear cousin wrote me a lovely warm poem, that I thought to share with all of you. 

   I can"t give  solutions to all  of  life 's problem, but I can listen to you ,
& together we search for an answer.
I cant keep your feet from stumbling, I can only offer my hand that you may grasp it & not fall .
I can"t keep your heart from breaking or hurting, but I can cry with you & help you smile again.
I can"t promise your happiness always, but I can only share with you what life offers me,
 & be your friend forever.   

Ain't she a doll ? Thanx Neha,  my sis,  my fren'.
Love.
Shilpa. 


 

why me ? and i look and find others i have nothing to live for anymore i am killing my own son

Hi aysam,
When you finish   dealing with your self pitty,I hope you dont take too long time is of essence because your son needs you
Slow down and think and continue to think of all your blessings instead of thinking of yourself, think of your son, he is here now he deserve the best in life ," Parents that will do their best for him"
 
you can only do that effectively with a clear mind.
Many people would like too have a son regardless.

Go to the gallery on this forum have a look at the lovely children we have in our group they are perfect and they are getting treatments, which is  enhancing their lives and lengthen their lives span.
As Andy mentioned   you are in a better situation than many ,Plus you can access our support at all time.
Goodluck ,you are a lucky person
Kathy

Hi Aysam,

One of the best way to deal with what you are feeling now is to look down to people in even worse condition than you.

Please be optimistic as you live better off in a developed country like Australia and you will be able to manage your son's condition than compared to developing countries.

All you have to do is to give the best possible care to your son. Give him blood on time and stick to the chelation therapy and follow your doctor's advice strictly.

Most importantly, have faith. You know you can do it. I wish you can see the innocent faces of children here in Pakistan whose case have gone so worse due to lack of treatment in the early stages, but still you will see the determination in the eyes of their parents to struggle to the last resort.

Wishing you all the best and have courage!

Hi Aysum,

I can fully understand what you are going through or feeling right now,i know it feels like it's the end of the world, i thought along the same lines when my daughter was diagnosed,i felt like nothing can be done for her and she won't ever be able to live a normal life,doctors here scared me to death by telling me that thal's lifespan is limited to their twenties only,BULLSHIT,it's not like that aysum,world has changed,there is a lot of scientific research going on,you are lucky you are in a developed country like australia,you can have a proper treatment program there,count your blessings dear,look at me,what are you feeling right now were exactly my feelings,but now i feel that my daughter is much better then other so called normal people,she is living a healthy and joyous life,you can have a look at her pics in gallery and tell me if you can see anything wrong with her,no ,these kids are as normal as anyone else,they can do anything in the world,there are so many members here on this forum who are married and are enjoying life with their kids,THALASSEMIA IS NOT A DEATH SENTENCE ANYMORE, repeat it again and again in your heart and and raise your head and try to absorb those rays of hope your son's cute eyes are throwing your way, there is nothing wrong with him,with great and good care,your love and on-time transfusions and proper chelation he'd grow into a handsome gentleman and will make you happy.

Please stay strong ,we are here for your support,ask as many questions as you want,get involved with thal,it's medication and chelation and maintenance,and everything will be fine.

TAKE CARE,

ZAINI.

Hi Aysum,

Your son does not have a life sentence... I am a 38 yr old Female living in Sydney Australia...And what I have read from your post is actually horrific to hear someone say that....

Your son has the best of care here in Australia as others have told you..You say your son will suffer, well we all suffered to come this far...

Sorry but I cant post anymore to this..I am really annoyed from what I have read..

Aysam,

You probably have read our members responses, these people are the best when it comes to first hand thalassemia experience. The group will always give you the good news because thats what it is. Stop living in an ancient civilisation, we are in the age where medical science is exploring the human DNA genome and you are talking about thal living in early nineteenth century.

Its okay to have these feelings but you are going too far, there is an excellent chance that your son will see the cure of thalassemia in his lifetime. Count your roses not the thrones.

One advise I always give to new members is to seek maximum knowledge about thalassemia, participate and ask questions, that way you will have lots of confidence and trust in yourself and in your son.

Remember : Keep posting your fears and questions.

Hello Aysam
My son was diagnosed as thal major 4 months back when he was just about one year old. I was devastated. I couldn`t believe it was happenning to me. I felt it was just a nightmare and I would wake up and everything would be just fine. But not even for once did I feel my little boy had been pronounced a death sentence. My heart ached when I thought of the pain he would have to go through. I kept crying. Tears would just roll down when I looked at him . Once when I was reading the Quran , Hassan picked one of his picture books and started to mimmic me reading. That was the moment I decided that I was not going to let Thal rule my life. I am going to enjoy my son and enjoy him growing up. Life is back on track now. I stopped worrying about his future, because no use worrying about something that is not known to you. It is the present that is important and I am living it and letting my bundle of joy to live it to the fullest.
Regards
MAHA

Danielle, so good to hear from you.
Just seeing you smiling puts a big smile on face ear to ear.

Maybe I could hire a scooter too and give you a drag down the quarter mile..winner takes all.
The rules are, there aint no rules..(he he famous line from Grease the movie - Drag race between the scorpions and grease lightning)

Aysam, Things are better now than what they were 30 years ago.
Trust me..and i think a few older patients would agree.
Parents have internet to get help.
There's plenty of support groups out there, and not forgetting the Thal Society who do a marvellous job.
Our parents had no one.
Even the doctor's didnt know much back then.
When I was born, Dr's told my mother I wouldn't see past 9 years old.
Had my first transfusion when I was 2.
First started using Desferal when I was 9.
First started using an oral iron chelator when I was 34 years old.I'm now 35.
As long as we comply with chelating, and maintain our iron levels, we don't seem to have complications.
Things have come a long way.
Your son can lead a normal life.

Take Care

AD

Aysam your son is not sentenced for life and neither are you because your son has Thalassaemia Major. Thalassaemia Major is a CONDITION which your son has and providing YOU provide him with the treatment that goes along for this CONDITION your beautiful boy will be OK.

For day to day regime we need to brush our hair, brush our teeth and eat well. Apart from that your son will also need to do his treatment for a “normal” life. Be blessed with that as there are far worse out there. 

You live in Australia, here patients are very lucky to have the excellent care and that the patients don’t go without anything. What your son needs is for you to throw out the negativity that you have with this condition.  You need to come to terms with it and stop feeling guilty pardon the expression but “shit happens” we could sit here and discuss the what you should of done and what you didn’t do but its no negotiable now, what you need to do is think of the “what is the best thing I can do for my son NOW” You live in Sydney , you need to get in contact with your local society they will be able to direct you to the leading treatment centre, if you are not already at one. You need to get a cardiologist if you are concerned about yours son heart. I am very sure your treating doctor will guide you down the right path for this. HOWEVER if you have any concerns you can come back here to the forum and your query will be dealt with. There are plenty of patients on this forum with the expertise in dealing with Thalassaemia (sometimes better than the doctors themselves) there are plenty of patients from Sydney that will be able to guide you to the right doctors and there are also plenty of patients that will be able to answer any of your personal queries.

Your son is adorable and providing you are relaxed and content with things he will grow to be comfortable and relaxed within himself. Nobody can control our future apart from ourselves, as a Thalassaemia major patients myself living in Australia Melbourne aged 38 I do have some experience myself with issues relating to this MANAGABLE condition.

Wishing you all the best of luck.

Miaki 

Hi Miaki,

It's GREAT to see your posts again. back.

Hi Sajid

Thank you so much Sajid. I have been back and forth from time to time but I will try to be alot more pro-active on the forum.

I have missed you all very much and hope to get the chance to speak with you all soon.

Love Miaki xx

Miaki,
I'm glad to read from you I hope you are keeping well.
welcome back I've missed  your wonderfull postings
Kathy

Missed you a lot Miaki

Manal

Hi Miaki,

I hope you and Theodor are doing well,

Lots of love,

ZAINI.

Hi Zaini, Kathy11 and Manal,

Thank you for your wonderful words and great to see you all well and hope to meet one day SOON!

I'm back to regular visits now.

 ,