Pareeshay,
It is so great having you here. For parents and patients who have to deal with thalassemia everything can become so overwhelming and somedays it feels like we can barely contain everything that we are dealing with. As families we deal with the disease, the worry, with sometimes difficult hospital staff, teachers at school and other people in our lives. What we need more than anything is family members like you who care, understand and unconditionally love and support us.
Zaini is doing such a wonderful job of taking care of our precious little Z and she has done it with such success even though much of the technology we have in North America is not available to her. While taking care her daughter, Zaini has also supported all of us and been there for us through so much. In many ways Zaini has done a better job of taking care of her daughter than some people in Canada and the US - and I am very inspired by that. At the same time, doing all of this is so draining and sometimes requires parents to give more of themselves then they have. It is great that Zaini has you to understand her and unconditionally support her - and you joining this group will help you understand Zaini's life even more - it is so awesome that you have joined us
I hope that I can meet all of you someday
Sharmin