Sundays @ Samraksha

Sundays have had a different meaning altogether for Project Samraksha, the Thalassemia Day Care Centre at Rashtroothhana Parishat. While the rest of the world enjoys their day off from work, the staff of the blood bank and the day care center put their best foot forward to work on their busiest day of the week. With the intention of causing minimal disruption to education and work for the families of children suffering from thalassemia. Samraksha continues work on the weekend. Individuals who need to come to the centre more often than the others are scheduled to come on Sundays. Also are welcome other families who want to get HLA typing done, who are preparing to go ahead with bone marrow transplantation and even those who generally want to meet and discuss general issues related to care and management of thalassemia. After a full busy day at Samraksha on a Sunday as we walked down from the 5th floor of the building, we recounted the events of the day. On a single Sunday we had: · 26 children who had come for their weekly therapeutic follow-up · 11 transfusions · 14 family HLA typing · 8 pre-transplant preparation follow-ups · 2 outstation families for counselling and guidance · 7 individuals screened for hemoglobinopathies · 1 pre-natal counselling · 3 family counselling over future options All of this happened just like another day at work. All lab tests were done as usual, the medicines were given to the children for the coming weeks as usual and the electronic systems were updated just like a regular day. Just for a moment, it looked like the dream that we had for children suffering from thalassemia is beginning to take flight. We as a team are fortunate to be receiving the trust and support of the families of children suffering from thalassemia, a wide range of collaborating organizations/individuals and our donors. The culmination of all of this is creating an environment which is delivering holistic and comprehensive care for thalassemia. We take immense joy in sharing that the system is able to deliver care and interventions in-line with the established standards and protocols to each child irrespective of the financial background. Most encouraging is the enthusiasm and the energy in the team. When we look at the face of the staff nurse, or the doctor or the parents who may have waited for quite some time, hiding the fatigue is a bright smile and willingness to do more. The number of individuals born with thalassemia who do not get proper access to treatment and care is shockingly high. Even with the growing numbers, we know that we are just at the tip of the iceberg. With the right team, the right mindset, commitment and hard work, we hope to play our small role in giving life a better chance for more individuals suffering from thalassemia.