July 14, 2020

Mumtaj Surya an inspiring mum talks on living with thallassemia

Here’s a story that infuses hope and positivity in life. Informed that she will have a short life ahead, Mumtaj Surya’s parents were devastated. Yet their determination and the young girl’s grit to fight for her life has made her the woman she is, the mother she is and yes she is continuing to live fighting her way out. This is a story we definitely recommend you to read.

Surya was born as the second child to an advocate couple who were shattered to understand the gravity of the situation, that their daughter had thalassemia.

Sharing her story with Mums and Stories which is truly an inspiring one, Mumtaj shares, “I was lucky to have really understanding parents and siblings.

I truly feel when a child goes through a major impact, it depends more on psychological assistance than anything else to help the individual cope with the situation.

My parents were obviously shattered as they the situation the impact it would have on my life and on their only when I was 4.5 years. This is a genetic condition called thalassemia and both my parents were carriers, even though they were unaware.

Apparently in school the teacher and the Principal noticed that I was not as active as other kids or interested in things around me. Strange that until then the doctor who was seeing me during my regular checkups too didn’t notice any milestones missed. Neither it was perhaps noticed at home as they might have thought I am a weaker child.

I also stayed in a small hometown in Tamilnadu and people were really not aware. My parents have been advocates and today I am a mom to a toddler, an advocate and a thalassemia fighter.”

Mumtaj Surya does mention that thalassemia individuals have a condition where there are less red blood cells being produced and these need to be replenished often. The body due to less RBC has inadequate hemoglobin and this results in anemia. The children may look pale or may often have shortness of breath.

When asked on how did siblings and the general society has been to her condition, Mumtaj Suriya shares, “ I would feel bad if I couldn’t play certain games as I would be more tired than others or couldn’t run or being thin and I have been asked numerous questions and subjected to taunts too. But my parents figured out that I loved to read, write, am a good orator and they would just let me be what I wanted to be. My father was highly instrumental in pulling me up, every time I felt like going down in my journey.

(Mumtaj with her mother, Manimozhi AnandaKrishnan)

Likewise my mother which now I understand as a mom that she had been through a lot but she stood there with me and that was important. I remember once I just couldn’t walk and my dad carried me in my arms when I was six years old and my younger sister was all of two years old and she just understood that I required to be carried and she had to walk. Instances like these have been numerous and both my sisters have been with me all throughout.

Again I had an arranged marriage which according to me seemed impossible. But my husband, who is a distant relative was completely aware that I would require monthly blood transfusions, have to take my medicines and had many other concerns; yet he stood by his decision to be my partner.”

(Mumtaj Surya with her husband)

When asked on her name as it did sound different Surya says, “My parents have been truly progressive for their generation. They chose the first name of my sister to be a Hindu name, mine to be a Muslim name and my younger one has her first name as a Christian name. I am proud of who I am and absolutely adore my parents.

When I was trying to conceive, my doctor told me that I shouldn’t go ahead and it will be a major problem for me and the family. I think travel, meeting several people and sharing stories does help. In one such instance I was at Vietnam for a conference and I happened to meet this advocate who had come for the conference. Now she was a thalassemia woman too and much to my delight a mom of two kids. When I shared my fears, she just brushed aside everything and said I should be positive and go ahead if I wanted it to be my choice.

Back home, after a few months I did go the gynecologist along with my dad and husband and the first thing she mentioned was “Be ready for an abortion”. Probably she was worried about my weight. Yes I do weigh less and I do have to take medications where I am more on homeopathy than others.

But I am as normal as you only if you could see.

I was of course upset on the doctor’s verdict on my pregnancy, but my dad said, “Doctors long ago had told us you won’t live more than 16 years, but today you are going to reach 30. Don’t let statements bother you”.

“Finally I did visit many other gynecologists and found someone who I was comfortable and was referred too. She did handle my pregnancy well though she wasn’t sure of a would-be-mum being a thalassemia patient.”

(Mr. and Mrs. Anandakrishnan- Mumtaj Surya’s parents)

Surya does mention that many children in her village didn’t really live more than they were 10 years old and probably the reasons are varied. Parents find it a burden to take care of thalassemia children or aren’t aware or even don’t’ encourage them to fight the condition out. According to Surya, thalassemia is a disability and one needs to learn to manage it just like any other disability.

When asked on her schedules as a mum and someone who is living with thalassemia and a working professional, Mumtaj Surya shares, “I breast fed my child until he turned one and yes he is a carrier but the only thing I have to do is see to it that he doesn’t choose a partner later in life who is a carrier too. Rest he is a normal child -as naughty and as mischievous as any other kid. I do have to go to Bangalore every month for my blood transfusion which I have done over 300 times and it hasn’t been an easy process. Even when my baby was much younger, I had to take him during my travel and manage everything. Nevertheless I can’t ignore the presence of angels in my life who are present in the form of best friends, parents, siblings, husband and my child.”

(The proud mom with her child- Mumtaj Surya- All photographs are subject to copyright).

Probably when the taunts are too high she does feel like vent them out and in one such post on social media she says, “Don’t ask me why I am lean.

I don’t have an answer in a single word.

I am not a poor eater nor a fussy eater.

As a Thalassemic So far I had more than 300 blood transfusions in my life. I underwent splenectomy and cholesesectomy. I had a Cesarean to deliver my baby. I have had  several infections so far. My blood reports never showed normal. Yet I am running up with my toddler, I cook, I wash vessels, I sweep, I attend the court, work all the day . I don’t know why I am so thin so DON’T ASK ME WHY I AM THIN.”

Lastly Mumtaj shares that she finds a lot of parents pressurizing children to achieve. She has a word of advice for them. “ Just let them be and give them their space and pace. Please believe they will shine in their lives and you will see that they would one day.”

We at Mums and Stories hope that many individuals who are battling such conditions or parents who are stumbled with hard decisions or get to know on their child’s condition do take courage and learn to fight it out just like Surya or her parents have done.

(All photographs are subject to copyright)

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