The Parents Association – Thalassaemic Unit was formed on February 22, 1986 with 34 parents of the Thalassaemic children and some honorary workers who were interested in rendering service to the children. Late Mrs. Leela Moolgaokar was the Founder Hon. President. Shri Pankaj Udhas is the present Hon. President and Shri Thakorebhai Desai the founder Hon. Vice President.
The Thalassemic Unit, at St.Geoge’s hospital was sanctioned by the state government in 1980, and there were four children who took blood transfusion in 1982. Today, there are 100 children under treatment, and more than 40 are on the waiting list. These patients are treated in this unit on the OPD basis with the latest way of management. We have hardly any reservation in our mind saying that this is one of the excellent Thalassaemia Units in India.
Blood transfusions and the relative treatment are given free by the state Govt. Due to regular transfusions, the body registers a high iron content, which spreads into the different vital organs of the children causing an early death. To counteract the effects of iron, an injection “DESFERAL” is given to the children.
The Government of Maharashtra is generous enough to give blood free of cost but could not give desferal injections free to the children. Hence, we formed the above Association. The aim of the Association was to send in appeals to charitable institutions and generous minded individuals to donate generously towards the funds we started collecting for injection Desferal. Our efforts are bearing fruit and the Lions, Charitable Institutions and many individual donors have come forward to augment our funds and help us in our humanitarian efforts. The child’s age limit, after Desferal is given, increases from 15 and 20 years to 40 and 50 years. It also leads a more normal and healthy life. But, group children – just thrice a week. Out of 100 children who are under treatment, only 18 can afford their own injections; we cater to about 20 more, still there is a need for more. Actually, the injection should preferably be given every day. Recently we have started Cap. Kelfer oral iron chelator also.
Moreover, these Desferal injections are to be given by special infusion pumps imported from the U.K. called as “ Syringe Driver”. Each pump costs about Rs.20, 000/- and with the help of this pump one injection of Desferal is given for the period of 8 hours. Slower the injection given better is the chelation of iron. So far, we have received 18 infusion pumps as donation.
Some children come from out of Bombay to get their treatment. The age limit of the children vary from one who is not even a year old to 29 years.
Our future aspirations are to try and eradicate the disease altogether. That requires pre- marital counselling – if all prone to Thalassaemia Minor are diagnosed in time and advised not to marry another Thalassaemia Minor, these children will not be born and so much needless suffering for parents and children can be avoided. Even after marriage, the mother should get a test done on the foetus of the unborn child – it will also show if the child is suffering from Thalassaemia Major. In that case, the child can be aborted in time.
To eradicate Thalassaemia, we have published many pamphlets and books giving brief account on Thalassaemia, communicates involved, hereditary aspect, pathology, early symptoms, investigations, recent method of management and hopes in future.
We are also on the verge of producing a short film on blood banking and Thalassaemia. This would be exhibited while making appeal to masses for donation of blood and to restrict the incidence of Thalassaemia.
We have also started Marriage counselling with the help social workers to eradicate Thalassaemia and started Thalassaemia detection centre in association with C.B. Patel research Centre above Bhaidas Hall Vile Parle (w), Mumbai, and detection camps are being organized every month.
Our trust has been registered as a Charitable Trust vide No.E 10772 (Mumbai) dated September10, 1986. The Donations to the trust are exempted U/S 80-G of Income Tax Act, 1961. We are eligible to accept Foreign Donations under Foreign Contribution (Regulation) Act, 1976 bearing registration No. II/21022/68(99)/89-FCRA-III. DTD 03.02.1990. We appeal to all to contribute generously to help these needy children.
We require more and more blood donors as each child requires a transfusion once a fortnight.
We also appeal for more funds for tablets for chelation of Iron and Bone–marrow transplant surgeries.
Trust Registration No E 10772 (Mumbai)
Trust Registration under Section 80 – G of Income Tax Act, 1961: DIT(E)/ MC/80-G/2667/2007/2008-09
Foreign Contribution (Regulation) Act, 1976 Registration No II/21022/68(99)/89-FCRA-III. DTD 03.02.1990