On World Thalassemia Day

Sankalp India Foundation has been involved with Thalassemia management for 3 years now but walking into the thalassemia day care is not an easy thing for me. I love to interact with the children and the  families, try to reassure them, help them with their doubts, listed to them, and see their smiles. However, what sticks to my mind more is the occasional sigh of child with bad complications associated with improper thalassemia management. Like all Sankalp volunteers  I tend to spot what needs to be fixed faster than other things.

 

By the time most children come to our centers for the first time, they have already been subjected to years of inadequate and unscientific  disease management. Most of them are under transfused with baseline pre-transfusion hemoglobin in the range of 3-8 gm/dl. While most have never taken any chelation therapy, even those who have, tend to come with heavy iron overload. Children come with stunted growth, large spleen, large liver, bone and maxillofacial abnormalities and prominent manifestations of iron toxicity. When a 16 year old need to be supported by a parent when he or she walks it shows the disability of the system we have to take care of our children. Once you are aware that all of this was avoidable and manageable the yearning to get things right for these little ones is even more. However, their suffering, lingers on in the mind for a while. 

 

This morning, as I got ready to attend the World Thalassemia Day program at Samraksha - the Thalassemia Day Care run by Rashtrotthana Parishat, I was recollecting the same time last year when we the Sankalp volunteers were desperately looking to augment the day care center we support at Indira Gandhi Institute of Child Health which was already full.  The second day care center enabled care and proper for more children.  

 

As we entered the function hall the breaking news for the day was one of our child had got her PUC result and she had scored 97%. An immediate sense of pride and happiness set the right tone for the day to come. The room was bustling with activity.  Amidst the hustle bustle my eyes set on another child. When I saw her for the first time, she could hardly walk but that was 6 months back. Hyper transfusion regimen, endocrine investigations and follow-up, aggressive chelation and a whole lot of care and love is what  we hoped will her improve her situation. What a joy it was to see her rush from one corner of the hall to the other, distributing the most beautiful hand made cards she had prepared for everyone. The mood in the room was very different from the day when the day care was inaugurated. That day it was more of scepticism and hope clearly visible on the faces of the families. Today it was a look of contentment and happiness. 

As I exchanged pleasantries with several children and their families, sometimes with just a smile, the twinkle in the eyes was very noticeable.  Children were busy drawing and painting. That's when the elder children announced musical chairs. Amidst the children running around the chairs, my eyes were fixed on the little angel whose health records has come as a nightmare to me a few months back. She has been taking treatment in a corporate hospital for years. Each month her parents had been spending thousands of rupees carefully abiding by the advice of the medical team. Yet seeing a 10 year old with a 22 cm spleen and a 11 cm liver was something that had taken very long to sink in. Today  I saw her running around the chair with determination to win in her eyes winning a prize in the top three. The remarkable progress she made in last 6 months whispered something in my ears. 

 

I met another family which proudly told me that their little one's ferritin had fallen for the first time in years. While I was speaking to them, a dance program on the stage started. The girl enchanting everyone in the room with her innocence and elegance was the same child whose parents promised me that they will put her back in the school in this academic year. Last year they said, she was too weak to even walk around the house - school was a far fetched dream.

 

Some parents walked up on stage and shared their feelings about the facility. I am not sure if it was the words which spoke more of the emotions reflecting though their expressions. Almost in tears their recollected the journey of transformation their kids had undergone in the bygone months. 

 

Today was a very exceptional day for me. I was elated. Very happy. I realised that the dreams that we all dreamt together were taking shape. I realised that each unit of blood donated, each rupee contributed, each minute spent, each facility made available was coming together to shape a bright future for our children. 

 

Dear donors, dear contributors, dear doctors, administrators, volunteers, dear friends and family I witnessed today the transformation you are making. And we the volunteers of Sankalp are ever more committed and determined to make the dreams that we dream together - happen!

Happy - World Thalassemia Day!