The Dream That Persists – Possibly Forever

November 14 2011 saw the birth of a new commitment for volunteers at Sankalp. From a bunch of volunteers taking up emergency blood requests and organizing a few blood donation drives, we took up something more serious and potentially game changing.

On that day, Sankalp’s first Thalassemia day care centre was inaugurated. The fact that close to 90% of thalassemiacs in India do not receive proper care and management (As per the results of a study published by WHO) was too hard to be taken lightly. That day the dream was to make life better for each child with thalassemia. A challenge was taken up to deliver the best for each child and yet not pass on the burden of finances to families of the patients. There was excitement mixed with apprehension as to how far we will go. For the first 18 months, volunteers believed in streamlining processes and protocols in order to deliver systematic care and management.

In collaboration with our technology partner Jagriti innovations a technology platform named ThalCare was built. We forged relationships with several other organizations, vendors etc in order to ensure that treatment plans are never affected. By August 2013 things had improved with number of patients at our center crossing 200 (it was 66 on day 1).

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Owing to the growing list of patients and the limited capacity at the first centre, things fell in place for the start of the second centre – Samraksha. Several patients came here too. Scheduled appointments, procedural treatment routines including documentation and updates on ThalCare of every aspect (ex. Pre transfusion Hb, growth parameters of the child, hb at the time of discharge) became a norm. Day care coordinators ensured compliance and adherence to treatment plans.

During this journey we were lucky to have known and forged a relationship with an organization named Cure2Children who are doing a massive amount of work in addressing the problem of thalassemia in several developing nations. With support and guidance from Dr Lawrenece Faulkner, we learnt that there could be more to do. Biochemistry, serology, cardiac, endocrine, dexa scan and other tests were introduced. Every effort was being put in to determine the possibility of complications and address them. ThalCare matured into the most powerful system in the whole world for thalassemia management. Several national and international organizations applauded the ease with which it worked. ThalCare was extended to a few more centres in India. But then, if you think that all is done and sit back you fail to see how much can be done. That is when Bone Marrow Transplant (BMT) was being discussed at Sankalp. Although some initial ground work had been done, no substantial progress was on lines of identifying children and taking through the process of transplant.

Since June 2014 time and energy was spent on identifying the right candidates, preparing them medically and most importantly making BMT affordable for our children. Be it HLA typing for families, Hydroxy Urea as a new treatment routine for eligible patients or working on the socio economic factors of a transplant along with the families – everything was done. We knew that this was more serious. We knew that we are taking up the responsibility of saving a life. With the help of several philanthropic individuals, 3 children successfully underwent BMT at an associated centre in Jaipur. The costs have been optimized so drastically that the total cost of the transplant is 50% or less compared to any other transplant centre in the country. Yet, the success rates are among the best in the world and definitely the best in the country by a good distance. The fruits of hard labor is out. Finally we have children dropping out of our centre – because they care CURED! The levels of hope and energy in our daycares is at an all-time high. While the children receive transfusions, the parents sit and chit chat about the road ahead – towards cure – wherever possible. The young children, even in the most dejected and deprived families, are being seen in a new light – the light which promises a bright future. Even those who do not have an option for cure immediately, know that science is catching up and they must maintain themselves well because sooner or later – they too may have the option of cure. The joy which the parents, the children, the families, the doctors, the care givers and the volunteers feel extends further.

These transplants have been made possible because of exceptionally generous men and women who contributed towards these transplants. While Sankalp strived to ensure that each transplant is done in the most judicious and non-profit manner, the friends and well-wishers made sure that cost does not form the barrier between the little children fighting thalassemia and a cure for a lifetime. Hat’s off to all the donors! In the meanwhile we wondered if there is a possibility to have the pain and suffering reduced further for the families. We dreamt of a similar transplant centre in Karnataka. After more than 6 months of efforts, we are close to realizing that as well! Sankalp India Foundation is on the verge of inaugurating a Bone Marrow Transplant Centre in Bangalore.

Things are being put in place for the official inauguration of the centre towards the end of August 2015. Details of the same will be made public over the coming days. More than 20 children have been identified as potential candidates for transplant. Should the final pieces of the puzzle fall in place soon, we will have several children undergo transplants and be completely cured over the next year. Plans are being put in place to offer HLA typing for patients at other centres and offer those patients too a chance to be freed of the burden of dealing with thalassemia forever. We will reach out to several centres over the coming months to be able to make this a reality. We know that we are not done yet. For us the dream is on. We will possibly continue to dream forever. At every milestone, we are motivated to dream further of the endless ways in which we may be able to give these young lives a better chance at life. For example, should these transplants go as planned and the children recover fully, the question of how do we cure other children (for whom transplant from a sibling is not possible for several reasons) will come back to haunt us. Is haplo transplants the way forward? Or is there something else being discovered and worked upon that can make a difference?

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