May 09, 2008	Friday	Jamadi-ul-Awwal 3, 1429

NAWABSHAH, May 8: Nazeer Ahmed Jamali, a primary school teacher, has run into heavy debts and risked endangering job over treatment of his three children who are thalassaemia major patients.

He travels 25 kilometers every 10 days or sometimes every week from his tiny village, Wassayo Jamali, to Thalassaemia Care Centre in Nawabshah to get new blood transfused into his kids to ensure they keep alive.

Mr Jamali admits to his mistake of fathering children, one after the other, even after coming to know they carried the killer disease in their genes. “I know I did a mistake but I can’t undo it now. I have to bring Sitara, 12, also a hepatitis-C positive, Marvi, 7, and five-month-old Fahad to the centre every ten days and sometimes every week,” he said.

Although the centre does not charge him a penny he still have to pay for conveyance and 60 Desferal injections for the three children which cost him Rs9,000 a month.

“I live from hand to mouth and face difficulty obtaining leave every week but have to do everything in my power to save lives of my lovely children,” he said.

Jamali’s niece Saima, also a thalassaemia major, lost life a year ago at the age of 13. There are 307 registered thalassaemia patients at the centre and of them 30 died from complications like increase in iron levels in the blood and hepatitis.

The centre is faced with serious financial crunch. It is almost increasingly becoming difficult to run the centre’s affairs without meeting recurring cost, which includes salaries of eight-member staff, including laboratory technician, laboratory assistant, computer operator, transfusionist, watchman and gardener.

To make matters worse, a huge number of 104 thalassaemia patients are also hepatitis-C positive and three hepatitis-B positive and their life is in danger due to unavailability of C therapy and Desferal injections, which reduce iron levels in the blood.

District Nazim Faryal Talpur greatly helped in the establishment of the centre by arranging building and donations through a conference and funds from Citizen Community Board and district council.

The centre applied for Rs5 million funds after getting registered with the Community Development Department a couple of years ago but unfortunately the department approved only Rs2.8 million. With the financial year about to end the centre has only been received Rs500,000 of total Rs1.5 million from the council funds.

The centre purchased a refrigerator, an Eliza machine, a chemistry analyzer and a cell separator from the CCB funds and paid for Desferal injections, salaries to the staff and other running expenditures from the council funds.

The centre is a brainchild of Dr Sadiq Siyal, senior pediatrician at Nawabshah Medical College Hospital, who was managing blood transfusion of more than 50 thalassaemia major children before the establishment of the centre.

Dr Siyal, who is secretary of the centre told Dawn that the centre was facing acute shortage of funds as well as space, as the number of patients had jumped from 60 to 307 within a year and it continued to rise. The centre needed funds immediately for the construction of blood transfusion hall, auditorium and kitchen.

He said that he was also receiving donations from some friends and mentioned Rahim Bux Dahiri who helped the centre with Rs300,000. Thirty of 307 registered patients had died due to complications as most of them were hepatitis patients as well, he said.

A thalassaemia patient required at least 20 Desferal injections a month and each injection cost around Rs90 in the wholesale market. The centre was unable to provide it to patients as the injection would cost Rs3 million a year, he said.

“I have written to the Prime Minister’s Programme for Prevention and Control of Hepatitis as well as NMC Hospital informing them about the number of hepatitis-C patients at the centre but it had not been provided any therapy yet,” the doctor said.

He feared if the centre did not get much-needed funds during the current month, it would be impossible to run the centre and lead to its closure, posing a serious threat to the children’s lives.