‘This minute is real in my life, I didn’t even think what will happen tomorrow. Pain and fear become part of my everyday life. However, I wish to live alive because my mom and dad are living for me only. I should do something for them. I have to earn and buy at least a shirt for my dad’ – Aarthi slowly limped toward us and began to speak by carrying artificially fitted binocular bag.
Her words are too confident even after facing so many difficulties in her life. Aarthi is suffering from a rare type of disease called Wilson Disease. Wilson disease causes the body to take in and keep too much copper. Normally, our liver takes copper from our bloodstream and puts into ‘Ceruloplasmin proteins’. It is then released into the blood plasma. When this protein is affected by secretion, the copper deposits in our liver, brain, kidneys and eyes. This causes tissue damage, tissue death and scarring. The affected organs stop working normally. Doctors said that ten per lakh affect by this disease. It’s rare to overcome the suffering of Wilson disease.
Aarthi is suffering from Wilson disease from the age of 13. Due to the effect of Wilson disease, she is suffering from damages like malfunction of the liver, inability to walk and gallbladder damage. In spite of this deadly pain, Aarthi is struggling day by day to overcome Wilson disease and also for her studies and for her future. There is much confidence in each and every word of Aarthi. She seems much active in the midst of her body tiredness.
‘My dad is an auto-driver in Chennai. If he drives auto the whole day, then only we can able to eat dinner. This is my family situation. We spent many days without food. But not even a single day we spent without medicines for me. My age is 24 now. My parents are struggling a lot to save me for the past 13 years. My dad spent all of his earnings only for my medicines and tablets. In these 10 years, I never have seen my parents buying new clothes for them. Many nights they went to bed by drinking only water. On seeing all these, many days I think that I m unworthy to live. But, my parents have the confidence that they will cure me. At least for their hope, I wish to live. If I could have not born to my mom, the society may called her sterile. But, by giving birth to me, she has faced many difficulties’ by wiping her tears she started to speak again.
‘When I was 10 years old, suddenly I vomited and fainted. After taking many tests, the doctor gave me tablets and sent us home. For the past 13 years, those tablets are the only reason for my survival. I can’t run or play as other kids do. But my mom plays with me. She is my only best friend. Now also my mom carries feeds me food like I’m an infant. Her total happiness is me only. Many of my relatives scolded my parents for spending much money on just a girl baby’s studies and treatment. But still, my parents have the hope for me that I will become a great person and I will take care of them in future. I believe that I can do.
By the compulsion of my dad, I continued to study, because he told that after his death, my education may save me. I studied for my dad’s sake and I scored 75% in school and joined BCA. When I was 19 years old, I suffered from fever and fainted. My dad was out of the station. I heard only my mom’s voice screaming for me. I opened my eyes, I can’t even move because I was in ICU. I was hospitalized for a month. After taking all tests, the doctor said that my liver has been damaged and operation should be done immediately. From that day, all the issues started. Still, now my parents are running for help to save me’ with tears in her eyes Aarthi stopped to talk.
By consoling Aarthi, her father Venkatesan started to speak, ‘Me and my wife are uneducated. My dream is to make my daughter educate well and to bring her a great person. For that only reason, we didn’t even try for another baby. But as a father, it’s really very painful to see my daughter’s sufferings. Doctors said to transplant the liver. I see the people as my lord who helped by giving 500 and 1000 in my critical situation. We registered for liver in Stanley Hospital and we waited for 3 months. After that, we transplant the liver to Aarthi from a girl who died of an accident.
Aarthi got normal and she started to go to college again. She said, “Dad, next year I will go to the job and I will repay all your debts”. We started to live with a new hope. But, it didn’t extend for 2 months. The medicines which Aarthi took for the treatment of liver reduced the white cells in her body. If she gets wound, it will take nearly 2 hours to stop the flow of blood. She suffers for 10 days during menses. She sits in the restroom and she won’t come out. The doctor told that to retain the blood, we should transfer blood platelets into her body. Whenever white cells reduce, we transfer a unit of blood platelets into her body. And even after menses also, we transfer a unit of blood platelets. Not only that, but steroids in medicines also affected her femur (thigh bone). Aarthi is unable to walk now. The gallbladder is also blocked.
Again, we went to Stanley Hospital and admitted her. They said that to remove the block, the operation is the only solution. As COVID-19 issues started to spread rapidly, they refused to do the operation now and discharged her. They told that will do the operation after COVID-19. So, they put a hole in her stomach and fixed an artificial bile discharge bag. We can keep that bag at home itself. Whenever we change that bag, Aarthi suffered from pain a lot. Till now, we have a debt of 5 lakhs. I don’t know how many lakhs I need hereafter. Many people are helping. But, still, we need help. I have the hope that surely I will save Aarthi.
She is worrying that she is unable to go to college. She studied by being at home but, she couldn’t write the exams because her body condition didn’t support. Always she hugs the books and cries a lot. I feel that we lost the last chance to overcome these difficulties. But, I have the confidence, till my last breath, I will take care of my daughter like a princess. Now, Aarthi has started to prepare for Government Employee Exams. Surely, she will win and prove to this world who she is’ by saying these words, Venkatesan holds firmly Aarthi’s hands.
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Written by Jasmine