Hope is a good thing - may be the best of things..
Over last few months we have offered free HLA typing to 160 families in Karnataka,Maharashtra and Telangana.
If the families were to have got these tests done on their own it would have meant an expense of about 35 lakh rupees. But money here is not the important thing. Hope is. We selected those children whose family background is such that they could never have imagined to get an HLA test done by themselves. We tried to identify the most medically fit children who are likely to benefit most from Bone Marrow Transplantation and offered them the first step towards cure.
As an organisation, Sankalp believes that the option of cure from the disease should be available to every child.
The way things work so far, in our country, only the upper middle class and above think about BMT. The irony is that the poorer the family is the more they are in need of the BMT since they are unlikely to be able to manage and afford the cost of treatment of their child. Starting with HLA tests, the option of cure is prohibitively expensive for children. However, we are committed to bringing together individuals and organisations who are committed to saving the lives of the children - irrespective of their financial status. While Cure2Children Foundation supported the HLA typing, doctors and individuals involved in thalassemia management organised the things to be able to do the test for the children in the comfort of their regular blood transfusion centres.
An interesting outcome of HLA typing is hope and awareness. We organise an awareness talk before the typing is done where the parents get to understand the options available to them. Some of the parents share the piece-meal information they have gathered from various sources and seek clarity. Others get to understand for the very first time, that there is a very real chance of a good future for their child. The session also involves making aware the families the involved risks, challenges and outcomes of the various treatment procedures.
We have observed that once the parents attend the awareness program their compliance to the general treatment increases. The helplessness and the hopelessness that seeps in after years of constant struggle with regular transfusions and management is replaced by the hope and promise that modern medicine and a sensitive, caring society has.
We are hoping to get at least 25% matches within this pool of children. But that, would just be the very first step. The immediate next step will be to start preparing the children for future transplant even as we strive to bring together the financial resources and the expertise to ensure that each of our child get's access to world class treatment and care.
The first step looks good. But probably this was the easy one. Shortly the uphill task to actually convert our dream into reality will pick pace.
Each child, no matter what their family background is, no matter how poor they are MUST get an option to be cured from lifetime of disease and suffering.
This is an email we received from a person who is supporting one family suffering from thalassemia. He has sought HLA typing for them:
"Thank you so very much for your direction and assistance ........atleast now they feel they have a fighting chance and good energy always brings positive results ...... all love and blessings sincerely"
Time for action! For converting dreams to reality.
The first step looks good. But probably this was the
At Sankalp India Foundation, We firmly believe that each child must be given an option for complete cure irrespective of their financial status. The HLA test is the first step which determines whether the sibling can be a matched donor to the child suffering from thalassemia. The cost of HLA typing in India is around Rs. 10,000/- per child making it inaccessible to most families. Unfortunately, most families suffering from thalassemia are unaware of the possibility of cure.
Supported by Cure2Children Foundation, Italy