by Lawrence Faulkner
 

After almost two years of preparation we can finally offer a cure to the children of our first families. I arrived at Karachi airport at 7am on Wednesday June 25th, took a little nap at the hotel and met Sadaf at 10am in the lobby. 

At Bismillah Taqee Institute of Health Sciences we meet Sumaria, our newly employed volunteer coordinator, who showed us her work station (PC, monitor, scanner, and printer engraved in a cabinet connected to the internet). We spend the first hour going through our IT setup (emai, address book, agenda, database developed by Luigi, etc.).

We are ready to meet the families, the first one has a one-year old thalassemic child, the father communicates well with Sadaf and understands some English, we explain to him the risks and late effects of bone marrow transplantation. Both parents seem determined to proceed and we offer them to evaluate the compatibility of the other two siblings.

The second family has a two and a half year old girl (the same age as my son Tommaso). Both parents are educated and communicate well, understand the risks of transplant and want to proceed with HLA (Human Leukocyte Antigen) typing (this is used to match patients and donors for bone marrow transplants) of their other son and daughter.

The third family also has a two-year daughter with thalassemia. They are aware of the procedure and very determined to try to cure her. The parents agree to type the healthy brother. We have very clearly told all the families that the final decision will be of their doctor, Saqib Ansari, and of the head of transplantation, Tahir Shamsi.

We have lunch with Tahir, Saqib could not be with us because he is in the UK for a master. In the afternoon we meet the family of the first child who most likely will undergo transplantation since he has a matched sister. He is also two years old and his family leaves approximately 5 hours bus ride form Karachi where they regularly go for transfusions. Their family had 9 children who died from thalassemia and are very motivated. Their total income is in the range of 1000$ a year, they don’t speak English, understand some Urdu, but the father is more comfortable with Sindhi, the regional language. We will have to provide them with an apartment and a monthly allowance (approximately 150$) for the whole transplant period, at least 8 months. The father agrees to have pictures taken but prefers the mother not to be included. 

In the afternoon we discuss with Sadaf and Sumaria some organizational issues. Apparently home owners are a little resistant to rent apartments to us because of concerns relating to frequent turnover, hopefully we will be able to rent several apartments in the same building close to the hospital (approximately 300$ per two-bedroom apt per month). We will also provide cell phone, calling cards, furniture and air conditioning (today in Karachi is 35°C).

The following day we meet with Khurram Zaki Khan and Syed Munawar Ali at Metrics Research, the organization helping us with drug approvals and quality assurance. We go over the business plan. The first drug we need, thiotepa, should be approved in a couple of days. This is very good news.