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Fight Thalassaemia Initiative - We Dare to Care

Story of a young Girl - Born to fight Thalassaemia

 

"Does anyone in your relations is having Thalaessemia?” Pediatrician bounced a bombshell on already depleted and frustrated parents of a severely pallor yet cute, graceful little girl of four months age. It appeared as if fortune has removed the entire redness of blood from her body and left her as a dull white doll, in the arms of her father, anxiously staring at people around her in order to attract attention and asking an innocent question from her big colourless, smiling and inquisitive eyes. “What is wrong with you all? I am fine. Just look at me.”

 

“Yes, I have heard about Thalassaemia long time back, before marriage, from my sister, who is presently settled seven seas away from us, during her mandatory routine health checkup.” Girl’s mother broke the nauseating silence, created as an aftermath of bombshell, dropped by pediatrician.

 

After responding, mother and father of the little child, caring and lovingly glanced through each other, throwing volley of questions through eyes and anticipating some reply to kill the anxiety and expectancy, caused by the statement, mother made to pediatrician.

 

“I am recommending few medical examinations for ascertaining the cause of her bloodless outlook.” Pediatrician handed over a series of medical tests list to the father, who was already burdened by the lingering misfortune, looming stubbornly over the head and refuse to fade away.

 

In the grip of uncertainty and expectancy, the parents holding the child in the arms, wrapped with true fatherly love and motherly care, walked out of the office of pediatrician and headed towards the medical centre, a place where the destiny of the child will be uncovered.

 

And the test reports mercilessly flashed as a blatant truth; harsh, volcanic and thunderous. The word “Thalassaemia”which appeared to be alien and unfamiliar till date has entered as an uninvited wild guest into the dreamy vocabulary of the grief stricken happy family. 

 

The pediatrician murmured the already bare open judgment of Almighty, wearing an emotionless and undeterred attire of dangerously calm facial expressions. The time stopped ticking, the wind stopped moving and parents missed their heartbeat at every uttered word, resonating and engraving deep in the hearts. Only the lips of pediatrician were moving and attracting the fascination of the little girl, applauding at every uttered sentence, endorsing her destiny and indicating that I will rewrite my destiny. GOD Almighty is my friend. 

 

The radiance on the child face is so vibrant and full of energy that parents go drenched into it and became thoughtless and speechless. After all, a doctor is also a human being and the evident yet anticipated verdicts at that point of time can be camouflaged by miracle and wonders termed as unexplained act of Almighty God.

 

We Dare to Care

 

The brave Girl in story is suffering from life threatening disease “β-THALASSAEMIA MAJOR” by birth. Presently, she requires two units (240 ml each) of blood transfusions of Leucodeplated/ Washed Packed Red Blood Cells, every three weeks to survive. Besides this, she is also required to undergo iron chelation therapy, where upon a medicine namely Asunra (defrasirox) capsule (400 mg) is taken orally thrice a day to keep iron overload under control. Earlier medicine namely Desferal (deferoxamine) was taken subcutaneously, in a span of 8 to 9 hours, every night through infusion pump. The administration of drug was done by puncturing the stomach with a syringe attached to infusion pump. Presently she is being treated at Government Hospital.

 

She aspires to work as computer engineer in Google and help millions who are suffering from Thalassaemia.

 

Profitable Philanthropy – Rape of ethical nobility

 

Does this true life story moved you to an extent that you shell out a dollar?

Obviously not, why should i donate for the cause, alien to me?

And if at all i somehow persuade myself to shell out a penny, what will i get in return (bargain)?

Why should i participate (sorry invest) in an initiative which is not profitable? I am happy with my dollars, you stay happy with Thalassaemia? After all, these are your past ill deeds, manifesting presently and might prosper in future. Every life culminates, some on happy note to end prolong suffering and some earmarked with end of luxurious lifestyle. I am born with a silver spoon in my mouth and will die on the silver (maybe diamond) bed. Let the suffering suffers, why i should bother about alien matters.

Every Dog has its day, every cloud has a silver lining. Your day will also come. Your suffering will also end in due course. So Pardon me for not donating for the initiative, the cause to fight Thalassaemia. It is your brainchild, you nurture it and STOP bothering me further………

Welcome to the bandwagon of Profitable Philanthropy – A rape of ethical nobility.

 

But Wait…….

Before boarding this Bandwagon, remember three things

  • Alexander, The Great wanted his hand dangling out of his coffin to remind the blatant truth that you came to this world naked and will go back empty-handed, not even take back your beautiful body, forget about dollars.

  • Sufferings are never aliens, they are accidental inmates and destined to be your friend till life, irrespective of your monetary status.

  • You don’t believe in God, The Almighty. Do whatever you feel in this worldly domain and let your soul pay for your adulterated nobility.

 

Still want to board…..

Your Choice!

 

 

The RAPE of Happiness of Unborn.....

 

The Question will haunt you throughout your life and BURDEN you with sense of GUILT and DESPAIR!

 

Read or Forget it. Your choice!

 

It is shocking to see that 7% of world population are carrier of Haemoglobin disorder (as per World Bank 2006, report of a joint WHO-March of Dimes meeting 2006 ) Courtesy Thalassaemia International Federation.
 

And more shocking is that people are not aware, in this digital, wi/hifi age that they are the potential source to bring Thalassaemics to this world. 


As per inheritance pattern of Beta Thalassaemia or more popularly thalassaemia major, their is 25% chances in every pregnancy to have a diseased child if both the parents are carriers.


Let us talk in terms of numbers: (approx only and not to scare you all)
Total world population = 6+ bn (Billion)
Total population with Haemoglobin disorder = 0.42 bn
Total Thalassaemia Carriers = 0.1 bn (approx 1/4 of total haemoglobin disorder)
Total potential male carrier = 0.04 bn
Total potential female carrier= 0.04 bn 
(excluding transgenders from this)

 

Approx 80 million Thalassaemia carrier worldwide and growing at exponential rate. Moreover each Thalassaemia carrier is capable of passing the trait to next generation with 50% probability.

 

If not checked in time, the earth will be full of Thalassaemia Carriers in next couple of years.


Absolute Probability of male carrier having child with female carrier = 0.04/6
That is approx 0.007bn in numbers
Birth of potential thalassaemia majors = 0.007/4 i.e 0.002bn

 

Can you imagine nearly two million Thalassaemics in this World as on date and growing at exponential rate. Moreover 50,000 to 100,000 Thalassaemic deaths are reported every year.


And just because people are not aware of this genetic disease.
So kindly do your bit, get yourself tested for
thalassaemia carrier test (HbA2) a very simple and affordable test.

 
If positive for both parents, please take precautions towards giving birth to one more Thalassaemic in this world.


We are against abortion and respect the motherly and fatherly love. But use your discretion to go for a Thalassaemic Child or NOT.


You may get the Thalassaemia test done in the womb after third month.


Every Thalassaemic born will bundle you with LIFE LONG GUILT and DESPAIR. He/she will question your lackadaisical attitude of not getting yourself tested in time.

 

And what more, you will be responsible for this UNAWARENESS and RAPE of HAPPINESS of your beloved one.

 

I am doing my bit, you do yours...Act now before another child is born with β - Thalassaemia major.

 

So Don't ignore the fact. You may be the NEXT. Take care.

 

 

Thalassaemia - The Lost Battle

Written by Eshwarya Khanna for "The Anonymous Writer"

 

Standing on the porch with the moon right above my head, I can witness the snowy evening turning grievous. The sky is engaged in littering the snowflakes over my face while the air is heaving a sigh of sorrows. A cigarette is my only companion as I dawn my eyes on the sky, smiling back at my beloved.

 

She put down her weapons few hours ago and has refused to breathe since then. She wasn't fragile, but her hopes were; my words and even my blood couldn't save her life.

 

She was a thalassaemia inmate. Like any other sufferer, she too had widened bones that made her face look more dazzling. While some nincompoomps laughed at her for this reason, I laughed at them, because they could never see beyond her flesh and bones.

 

She was my childhood love. I’d grown up seeing her cribbing about the tasteless pills and sulking during the blood transfusion sessions. Decembers were not fascinating for her. She was usually down with a fever accompanied by bouts of cold. As the world sang prayers looking at Jesus, I stood by her side near the Christmas tree, holding tissues. When her immune system gave up, I gave her the strength.

 

She ended up marrying someone else at the age of 23. Even then, my love for her couldn't be smothered. I met her every month in the corridors of hospital, providing blood that ran through her veins for 12 years. Every time the needle pricked, it blew a smile on my face. Because I knew, it was the only way to stay in her heart.

 

She was seven when I had first accompanied her to the hospital. That day, I had promised her that once I turn 18, I’ll be there to give her my blood, which will never give her any pain. For the first 30 years of my life, I walked down the road of temperance, resisting every drug, alcohol and cigarette, fearing that it would make my blood impure for her.

 

For my life wasn't mine, but hers too.

 

She betrayed me yet again and transcended to heaven. If I could fight with my temptations for her, then she too could've fought with thalassaemia. Couldn't she?

 

This time, the wound she gave me is deeper than what the intoxications can only heal.

 

The cigarette in my hand is staring back at me, while my grief smirks back at her. In the smoke that zooms up in air, I see her hopes losing the battle, and in the ashes that cascade down, I see mine.

 

The brave Girl in immortal love story was suffering from life threatening disease “β-THALASSAEMIA MAJOR” by birth.

 

Be Human - A herculean task

Written by Saumya Rai

 

In India, we know what domestic help means to us. If there is anyone we remember more than our family, it's the lady/gentleman who takes care of our house while we keep ourselves busy with other things that demand our attention. Just a few days before I left Allahabad, my mother was in a deep crisis due to the absence of any such help at home. And with my grandmother being seriously ill, it became difficult for her to strike a balance between the daily chores, her work and taking care of my grandmom. After contacting a few neighbours, we finally saw a young lady standing at our door, willing to pull us out of the abyss we found ourselves in.

 

We thought things are sorted out now and it particularly delighted me because i didn't want to leave before i could help my mom settle properly. But the happiness was short lived. Just after two days of work, Mala (her name) didn't come. She sent across a message that she has been unwell for a few weeks now and has finally started to give up on herself. My mother immediately called her and extended financial help to get her Ultrasound done and buy whatever medicines the doctor prescribed. But of little help. Some 'Baba' had caught the fantasy of her community and she was forced to visit him. Finally i thought it's better to take her to a doctor myself so that i know what is ailing her (of course it meant i had to cut on my time that i dedicated to taking care of my grandmom). So Mala and i went to a nearby clinic where she got her check-up done. The doctor explained to me what's amiss and prescribed the necessary medicines. She barely had just 4 gm blood in her body!

 

What i didn't notice during all that time was the expression on Mala's face. She looked at me with all the love in the world. A mother of a 14 year old handicapped child whose husband had run away, she had no one back home who could assist her financially for a treatment. On our way back, she held my hand and said,' you have come like God for me. I work in two other households but they didn't trust me enough to help me a little more thinking that i might not return the amount they would spend on my medication.' She continued to bless me till we reached home.

 

Yesterday, Mala's mother came to meet my mom to thank her for taking care of her daughter. My mom called me up to tell me that i am being blessed time and again for my decision to take her to the clinic myself.

 

What was it that i did? Was it really worth all the blessings i received? I just did what was right. What we, as the more privileged lot, are supposed to do. Do we need to keep an account of how much we have spent on a person who needs our help? Do we really need that money back? I personally ensure that my domestic help eats a multi-vitamin everyday. Giving a bottle of Revital or iron supplements to them will not make any difference in our budget but can bring a significant change in their health. If you doubt that they won't spend the money on their health, keep a bottle of multi-vitamins for them at your own place and give them a capsule everyday.

 

And who knows. Maybe one day all these blessings add up and nourish us in more ways than we have ever helped. Keep doing good, because that's what we are here for.

 

We salute the braveheart Mother (Mala), the mother of Girl child, deserted by her husband in this real life story, just because the child was diagnosed with life threatening disease “β-THALASSAEMIA MAJOR” by birth. Above  all, the saviour's (Author) supreme humane act is  applaudable. 

 

 

An Initiative - Fight Thalassaemia

We Dare to Care

 

We have taken an initiative to help the, otherwise neglected people, suffering from life threatening disease "Thalassaemia", worldwide. We will help you and not let you go unnoticed and neglected.......

 

Continue Reading.........

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