How SAATH Charitable Trust Is Supporting Children with Thalassaemia Major and Their Families (VIDEO)

Prabhadevi resident Sujata Raikar had always wanted to do something for children who were less fortunate than her own, but had not quite figured out how or where to begin. A chance encounter with a young child living with thalassaemia major and her terrified mother changed both their lives — and Raikar’s.

“That was the first time I came across the term thalassaemia major, which I later learned is a genetic blood disorder. Children with this condition require blood transfusions every 10 to 15 days for their entire lives. Without them, they cannot survive,” says Raikar, who went on to found SAATH Charitable Trust in 2012. SAATH stands for Support and Aid for Thalassaemia Healing. She explains that apart from undergoing frequent blood transfusions, children also have to deal with painful side effects, while medicines and medical tests become a lifelong reality and hospitals their second home.  

What stayed with Raikar from that first encounter, however, were the mother’s words: ‘The father has refused to accept the daughter and wants to abandon her because of this disorder.’  “It was such a rude awakening. It is bad enough that these young children have to deal with medical issues, but they also face rejection within their families and social isolation. Due to a lack of awareness, even neighbours start distancing themselves from them because they believe the disorder is contagious,” she says.

A significant part of SAATH’s work involves providing lifelong medical support and counselling to families, while also creating awareness about thalassaemia. “The lifelong treatment and medication can drain families financially, so my organisation covers medical expenses, including daily medicines, blood tests, hospital bills, annual MRIs and related scans. Financial and nutritional assistance is vital, but families also need emotional support to help them accept and cope with the lifelong realities of the condition,” she says.

Raikar also conducts awareness sessions in schools, colleges, corporate offices and residential societies, along with blood donation drives and screening camps to identify if someone is a thalassaemia minor carrier. “The most crucial thing to understand is that this is completely preventable. All one needs to do is know one’s thalassaemia status through a simple blood test before getting married. A blood test for thalassaemia minor is more important than matching horoscopes,” says Raikar. She explains that if one partner carries the thalassaemia minor trait, but the other does not, their children will not have thalassaemia major.

Actor Smita Jayakar, shares, “Sujata is doing brilliant work through her NGO, and I am glad that she has taken up this cause to create awareness about this genetic blood disorder. A large majority of people do not even know about thalassaemia. What she is doing is extremely important, especially because she is also helping cover the medical expenses of young patients whose families cannot afford the lifelong cost of treatment." 

If you would like to get in touch with the NGO, you can call 9920779877.