He may just pass on as just another man from the hinterland of Bihar when you first see him. Vijju’s looks of-course don’t give out the determined and courageous soul inside. He is the father of little Chetan - a child from Bhojpur, Bihar who suffers from thalassemia.
There is a time, when in life some families face lot of difficulties, struggle a lot, and then, they came over of hard time. Daiyaan's family is a perfect example of this.
Sankalp Program for Thalassemia Management is aimed at ensuring that adequate and appropriate care is provided to each child taking coming to our centres. The overall aim is to resume normalcy in their lives. A key component in this pursuit is reducing the time it takes to provide appropriate medical intervention.
Whose responsibility is it to provision safe blood for patients in need? The patient/patient family? or the hospital/blood bank? or the blood donor/donor organizations or all of them together?
Thalassemia major is characterized by the individual not being able to produce enough good hemoglobin. This is called ineffective erythropoiesis. This condition leads to a cascade of compensatory mechanisms.
This year a young couple with 11 month old baby girl named as Prachi Bhanushali contacted us for help with Bone Marrow Transplantation.
It was more than a year back when we a family who had two little girls suffering from thalassemia from Afghanistan approached Cure2Children Foundation for help with HLA typing. The family was overjoyed to find that both the girls had a match. The father of the girls is a driver and could not have afforded transplantation.
Normally, when you tell a family which has a child who suffers from thalassemia, that they have a match, at least for one moment you expect to see a smile. This was not the case when we broke the news to five-year-old Nirmitha's family. She was detected with thalassemia within the first year of her birth and ever since she was dependent on monthly blood transfusions.
How do we offer transplants to more children?
How do we make transplantations safer?
How to we ensure that the best quality is delivered at the least cost?
A friend in need is a friend indeed. Information made available when required the most is often invaluable. Helplines are meant and designed to serve this purpose. Our social structure often provides helplines for a lot of prevalent problems. 10 years ago it was a surprise for our little team that there is no helpline to help in search of blood.
After the end of a long busy day as I sat to look at some videos, I got a call from Dr Reshma. She informed me that a child who is taking treatment at our centre needed an urgent appendicectomy – removal of his appendix which had become infected and inflamed. It was a Saturday night.
When I walked up the stairs of Samraksha today I realised that a little girl was peeping down from the stairs. The look in her eyes told me that she was waiting for me. I shared the usual pleasantries with the family and walked across a hall full of children and parents straight to the doctor's room.
