Hello Andy,
I signed the petition a few days ago. My son was diagnosed with beta thalassemia major since he was 8 months old. He is now 3 1/2 years old. Apart from regular transfusions and chelation, my wife and I have never stopped working towards getting him cured. We decided to have another child with the hope that a match would result. Prenatal testing at 12 weeks showed the baby did not have thalassemia major nor the trait. We contacted cryocell to also save the cord blood and tissue. This was successfully done. Both mother and baby girl are fine. However, the hla test came back with bad news. They did not match. We wanted to conduct a unrelated donor search, but the cost to do that is very high. Also my ancestors are from India but my wife family on her mother's side are indigenous to the Caribbean (Trinidad and Tobago ). Our hematologist said that it may be difficult to get a unrelated match and the process can take very long to complete. We were told that a haploidentical mother to child bmt procedure is an option and of course Dr. Sodani would be the one to oversee /do it. We want to do it but in light of the current situation at IME we are not sure if Dr. Sodani and his team are in a position to do so. Before we decided to try for our second child I did have a couple of email conversations with Dr. Sodani....FYI. I decided to post this because I know that all parents out there would want a chance to cure their child and I myself would like to know what is my next step. Should I contact Dr. Sodani like before or professor lucarli. Not sure what to do.
Kind regards,
Alicia and Shastri.