“Now I am living a ‘normal’ life. I eat, sleep and breathe; if you call it life”; says Mrs. Nisa Hussnain, an educated woman aged 35. Nisa, like other young girls of South Asia, always wished for a peaceful life with a handsomely earning husband and healthy children, in her teens. She got all her aspirations fulfilled easily, after completing her bachelors, at the age of twenty one when she married her cousin (which is a norm in South Asian Muslims), and was living a perfect life until imperfection knocked her door. Unfortunately life is not as straightforward as it seems to be. Accidents do happen which can entirely change one’s life. And such tragedy struck Mrs. Nisa on the dreadful morning when the doctor told that her child, Ehtishaam Hussnain aged only 3 years, was suffering from thalassemia; a blood disorder, passed down through families (inherited), which results in excessive destruction of red blood cells. The number of deaths by this disease is increasing day by day and sadly Ehtishaam became a part of these figures at the age of five on March 21, 2004, right in the spring. The suffering does not end here; instead it was just the beginning. In 2009, her second son, Adnan Hussnain also died from the same disease at the age of only two. “We (me and my husband) made much effort to save his life through blood transfusions… I prayed a lot for his health but sometimes prayers just do not matter… Losing my son second time completely ruined me”, she sighed sadly.
Since these dreadful incidents, Mrs. Nisa has started community service, aiding thalassemia patients and their families.
I met Mrs. Nisa, on a rainy Sunday afternoon, in her house located in Sialkot. Her guest room was simple but elegantly decorated, with a big framed photograph of an adorable charmingly black eyed kid, Ehtishaam. She came in after about five minutes. Her brown eyes, black hair, tall height, dressed casually in orange colored Shalwaar Qameez (traditional Pakistani dress) made her look somber and grave. She was a courteous lady. Her ethical and polite mannerism impressed me. As we conversed, she told me about the day when she discovered that her first son was suffering from such life robbing disease. “Those were the most agonizing moments of my life when the doctor told me that my ‘little angel’ was suffering from thalassemia. I can understand the pain of those mothers whose children are suffering. It is literally aching!”, she said while adjusting her orange colored dopatta on her shoulders.
Mrs. Nisa, unlike other afflicted mothers, started aiding people facing this disease instead of only sitting back and mourning. She began social work in Sundas Foundation, a non-profit organization which is completely dependent on donations, located in Sialkot. Here, she gathers funds and blood for the blood transfusions of the children. “Blood transfusions is a very expensive and lifelong treatment for thalassemia that is why our foundation treats poor children free of cost”, she explained. Along with that she mostly deals with the emotional trauma of the families, a subject of which she is most familiar with, since she was once in their shoes. “It is very painful for mothers to see the blood transfusions of their children…and it was hard for me as well when needles tingled my little sons” she said with teary eyes. As we conversed I realized that she is a strong lady who helps other patients and their families, but a ‘broken’ mother too who works day and night to keep her thoughts away from the hard memories of her departed angels, her two sons.
“When my second son died, it was the very moment I decided that I will spend the rest of my life volunteering to help families getting through this deadly disease. This is the only reason for me to live and breathe and this work provides me satisfaction”, she said in Urdu while brushing her hair with her bare hand.
When asked about the support of her husband, she answered in a grateful voice “I am fortunate that I had a supportive husband who helped me not only in overcoming the trauma but also aids me in my social work”.
Two years back she started premarital genetic counseling program and an awareness campaign regarding inter cousin marriage’s disorders. She told me that she wants to make people aware of these circumstances that cousin marriages can be very detrimental which may lead to inevitable genetic disorders. She explained in a strong and decisive tone, “Now, the latest key to a successful marriage is to get a certificate of your medical fitness.” After the silence of few seconds she broke it by speaking with a sigh “It is the biggest regret of my life that I never took these medical tests.”
“After the death of your sons, have you ever thought of adopting children?” I asked her.
“Yes initially many of my relatives suggested me to do so but to be honest, now I consider all thalassemia patients at Sundas Foundation, my own children. I take care of them and love them as my own family. Saving or at least prolonging their lives is the only aim of my life and to me it is more worthy than adopting a child and raising him”, she explained in undeniable tone while again setting the dopatta on her shoulders.
Two hours passed and I realized that this meeting and discussion is worth sharing with people and inspirational especially for girls. Nisa’s plans to marry and have children turned out to be more challenging than she ever had anticipated but her strength and generous nature led her to social work instead of just mourning on the already written fate. To me she is the symbol of courage and bravery who can inspire many afflicted mothers.