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The 1st thing you need to do is be positive. My son has thal major too and he has been transfused since the age of 7 months. I know we have a long haul ahead of us , but prayer and hope is our sustinence. Please try to stay with the chelation and be persistent. We do not have many thal majors in our hospital let alone our city, so our clinic is during sickle cell and oncology. The reality of life hits you in the face when you see young children with cancer. So when I see what those children go through I am thankful for this disease if it had to be between the the two. I will never know your pain, but as a parent of a child suffering from the same , stay strong and continue to be your own advocate because this is not well known still in this day and age. Please feel free to talk. Also the SQUID machine is used to tell one's ferritin level in the liver without doing a biopsy. It is extremely accurate and is similiar to doing an x-ray. Only located in california and new york,but told it was worth the trip.