i need a new pump

So I tracked down Chris, who is a member of our group and also active in UKTS to get a little perspective. As it turns out, Chris took this photo years ago and helped design the poster. This is what Chris had to say

its message is clear we r tied for life and untill someone or something frees us from being tied then the message remains ageless

I hope that I can help change the connotation of this pic in people's minds. Chris is a thal major. Chris will turn 50 this summer. Chris is in good health and has been an inspiration especially to the Maldivian kids who didn't believe any thal could survive to even 30. I will never again look at this pic without thinking of my buddy, Chris, and what a testament he is to what can be accomplished with full compliance. What I see in "tied for life" is hope, for it has been this tied relationship that has given thals life.

How you view things in life goes a long way to deciding your own perspective. View compliance as what can give one a normal life and not as a harsh reminder. Because of transfusions and chelation, thalassemia has become the only genetic illness where huge gains have been made and even more huge gains are coming. As harsh as the reality of thal is, it is what gives thals life and hope and when I see compliant thals marrying and having kids, having careers and even going to medical school, I see a reality that offers true hope. Parents, please realize that you have much more help with your kids than Chris' parents did when he was a child. Your own attitude will be a key factor in your children's view of their lives. Make it a positive, hopeful attitude with a view that your children should not find limits in life, but should reach for the sky and become everything they can be. Your reaction to your child's thal and how you deal with it is so important. It's very difficult to be a parent of a thal but how you react can make so much difference to your children. Listen to what Miaki has said about how her mom raised her and the great perspective it gave to Miaki who has never let anything hold her back in life.

I hope each parent can see that the way they handle thal will make a big difference to their children's future. Look inside and find the strength you will need to give your children a good life. Look to our group for support and information. Look to your children as the future.

Very well said Andy  as always

I always tell my daughter that only sky is the limit,thal or no thal you can achieve every goal through determination and hard work.

But one thing more important is parent's support,i am a thal minor,about which i didn't know until my daughter was diagnosed,it was my dream to become a doctor since my childhood,but my parents never let me,they had their own views and they imposed theirs on mine,my point is you are thal or no thal whatever you do in your life your parents support is also very crucial,so plz let your kids do whatever they want to do,whatever they wanna become in their life, be there for them.

ZAINI.

We all are tied to each other's heart

Hi all,

Well said Sajid, despite the fact that many of our members have never met face to face, we have all met via our challenges our accomplishments, and what we all go through in our day to day life. We are all one huge family that cares for ones well being and that has been shown time after time on this forum and that is why i personally am fond of u all.

We have to all face the reality that being tied to life as depicted in the picture being tied to a transfusion pole is true even as a harsh reality to many. Think about it , if we dont have blood transfusions where would we be?
If we didnt have chelation therapy , where would we be? That is the hardest harshest reality to face.

We have to be blessed and thankful for all we have that have assisted us to get to were we are NOW and to keep us getting to were we will be in 10 - 20 yrs time.  WE ARE TIED TO THALASSEMIA FOR LIFE and personally I wouldnt have it any other way!

Love u all dearly and I hope I am not to harsh when I speak but I dont like to cotton wool any post, this is reality.

Miaki 

Ps I forgot to say that I would like for Azis_asim to please feel free to put whatever picture he wishes to do so as his forum picture. And personally I would like to see the tied to life picture back up because when i see it it reminds me of what was me and what i have become and also for the fact that Chris took that photo and his talent should be rewarded

Miaki

PSS   Me again

sorry to be bringing this up again but i have just spoken to my uk contingent and they notified me that not only as Andy mentioned that Chris took the photo which was 16 yrs ago the child in the photo is now 17 yrs old.

Harsh reality people but a great outcome .....HOOK ME FOR LIFE THATS FOR SURE

Miaki,

I don't think we can ask for any better perspective adjustment than knowing that boy is now 17 because he has been "tied for life." Perhaps we need to remember it also means "tied TO life."

Ps I forgot to say that I would like for Azis_asim to please feel free to put whatever picture he wishes to do so as his forum picture. And personally I would like to see the tied to life picture back up because when i see it it reminds me of what was me and what i have become and also for the fact that Chris took that photo and his talent should be rewarded

Miaki

 

Ps I forgot to say that I would like for Azis_asim to please feel free to put whatever picture he wishes to do so as his forum picture. And personally I would like to see the tied to life picture back up because when i see it it reminds me of what was me and what i have become and also for the fact that Chris took that photo and his talent should be rewarded

Miaki

I agree with Miaki & Canadian_Family!  I cannot believe that Azis_asim was asked to remove the photo.   Transfusions are our lifeline, without transfusions the baby in the picture would not be a teenager today.



Asim, Get well soon!!

@andy thanks and i feel i am tied for now but someday i will get free.. and yes this is still the image for the uk thalassemia society homepage @all thank you for your wishes i am feeling better now and my HB is finally normal now

Asim,

It's good to hear your Hb is normal again. I hope you continue to improve. I know sometimes thal gets people down but rely on your inner strength. And remember that they guy who took that tied for life photo is almost 50 years old now. Everything is possible with compliance.

@andy i agree and the past two months was really tough for me my hb was 5.8 and platelets were 68 but now finally i am improving and i kept my moral high and kept saying to myself i must fight with thalassemia and i will win it was a battle between me and my disease so either i will win or thalassemia will win and i am proud to say I WON

Bravo Asim ,

ZAINI.

Since this thread was originally started by red,i hope she is doing well,it's been long she posted here,wishing you the best red 

ZAINI.