Fwd: -- In the making of a face, The woman who changed the face of the course of many people lives, I..Vascular birth mark foundation (Hope is the destiny one should aim at when there is some darkness
Hemanth Reddy
From: Hemanth Reddy <doctor...@gmail.com>
Date: Thu, Dec 18, 2008 at 10:53 PM
Subject: Fwd: -- In the making of a face, The woman who changed the face of the course of many people lives, I..Vascular birth mark foundation (Hope is the destiny one should aim at when there is some darkness
To: harinath <harina...@gmail.com>
From: Hemanth Reddy <doctor...@gmail.com>
Date: Thu, Dec 18, 2008 at 10:22 PM
Subject: -- In the making of a face, The woman who changed the face of the course of many people lives, I..Vascular birth mark foundation (Hope is the destiny one should aim at when there is some darkness
To: sikhap...@yahoo.co.in, lakshmi prasanna <prasan...@gmail.com>, vya...@gmail.com, Sweety Kotta Bangaru Lokam <vyshu.dee...@gmail.com>, "saipras...@gmail.com" <saipras...@gmail.com>, prane...@gmail.com, manoj_...@yahoo.com
Cc: Rajesh Babu <ruve...@gmail.com>, Rajesh Babu Chevendra <chevendra....@gmail.com>, praveen G <gprav...@gmail.com>, prave...@yahoo.com, "ran 10k in 50 mins successfully..." <shrad...@gmail.com>, "SreeHarshA. live like a legend" <hars...@gmail.com>
http://vbfindia.org/history.php
One in ten children are born with a vascular birthmark, or 400,000, each year in the United States (based on the 2003 census). Of these infants, 1 in 10, or 40,000 are born with a vascular birthmark that will require the opinion of a medical specialist. There are two categories of vascular birthmarks: hemangiomas, which are the most common tumor of infancy, and vascular malformations. These two categories, while related, are very different. It is very important to know the difference because the treatment is different depending on the lesion type.
My life so far had been an interesting and quite challenging journey. I was born in an Indian middle class Hindu family. My father had just started his career and my Mom was housewife married to him for around year and a half when I was born. I was my parent's first child. My father was first child of his parents and none of my uncles were married, so, my birth was a happy moment for the whole family. But, this moment could not extend much longer. Just after few days of my birth, I started developing a huge mass of tissue on the right side of my face. In couple of days it covered whole right hand side of my face including eyes, ears and head. A beautiful child of one month turned into a horrible looking monster. Everybody who would look at her, would turn his/her face with agony and disgust. You could hear people saying words like "oh, my god how ugly it is". "I'v never seen anything like that". The only people who didn't turn away from that face were her parents and her grandparents. Today, it is very hard to even imagine what it would be like for that young couple which has not even started its life properly and had to face this. It was month of summer. Too much heat. No air conditioning, no coolers. Young mother tried to take care of this little child, but it seems like GOD was trying to test her motherhood too hard. The child's face got infected. There was pus and swelling all over the face and head. For months, the little body of skin and bones had to be kept in gauges. She lost her eyesight in one of her eyes, lost loose skin from several parts of her face. And taking care of this ugly infected mass became a life for her young parents.
Years ago, it was something, which was unknown to anybody, even to highly specialized doctors. Nobody had any idea about it. Doctors diagnosed it as Hemangioma-liver but there was no treatment except some ointments to reduce the infection which eventually took away middle columella from my nose and small portion of my ear flap. After one year or so, my parents say, that it started degenerating and it left its ruminants in the form of swelling over my right eye area, swelling over the lip which made one lip to hang lower than the other, nose to stand without proper support, one eye smaller than the other, one ear lob slightly cut.
Few years passed. Little child grew up to become a naughty little girl. And then came the time for her to go to school and to face the real world. First time, she had so many children of her age around her. But, the irony was that there was nobody to play with her. Everybody hated her for her face. Instead of friends, she got stares, laugh and hatred. In just a few days, a lovely talkative active girl turned into a mute. As a 4 yr old child, she couldn't understand the difference between house and external environment. It was hard for her to understand why there is so much love in the house and so much hatred outside. She got very sick and had to be admitted in hospital. Getting well she came closer to her parents and life. She understood that for school, books are her real friends and in home parents are her best friends. She went back to school and from that point on she never looked back. In almost every class she excelled. With time she became the favorite student of her teachers and best friend of her friends.
When she was in 7th grade, her father visited US and asked her to accompany him with the hope of finding some treatment in United States. With the kind of life she was living because of her face, she could have been desperate to come here with her father. But, she knew it was going to be hard for her father to afford her since he was coming just for training, so she refused. There was something inside here which was telling her to tell her father "Daddy, one day I will go to America and get myself treated there." That time she didn't even know what America is like. She didn't even know that her treatment was possible at all. But, as the saying goes, GOD has a plan for each of us. We don't know what it is and when it is planned. But, something is there…and so may be that time…GOD spoke HIS plan for her.
Time passed by. At the age of 23, she completed her education and started working as a Software Engineer, with a reputed firm, at quite a high salary. Education and parent's principals and inner strength taught her to become a better person than a bitter one. She became a good, confident and a social person. Still many a times she became a victim of the same stares, same remarks and same laughs. Even though she raised herself too higher than what people had expected, still people didn't stop looking down on her, feeling sorry for her. But parent's love, their very positive attitude and her strong desire to accept the challenge and show the world that behind that ugly face, there was a very beautiful, affectionate, capable and strong person, kept her going and kept on giving the strength to face any obstacles which came across in this battle for acceptance of facts and attainment of her goals.
By this time, she had almost started accepting herself as she was. Though, it had already been a big struggle within her and outside world. Many complexes had set in and many had been overcome. Parents were proud and they always had smiling and encouraging attitude but deep inside their heart they were still sorry for her and felt guilty of not being able to help their child in the way they would have like to by finding the right treatment. They still wanted to see her equal to their other 2 daughters. By now, they had given her enough freedom to test and make her destiny, but now they were ready to make it by their hands. They wanted to see her settled in her life. In India, when you say "settled" for a girl, it means married. They wanted to arrange her marriage. Several houses visited and several families were requested. But, everybody wanted a normal bride. Abnormal had no place in their house. Parent's faith and determination was put on test again. A positive father and a sacrificing mother came back home with the hope that things will be better some day.
Things did get better. Time came when GOD'S plan had to come into action.
It was mid June of 1997, I just was released from one project and I had to wait to get in the other one. Internet had just started to affect our lives. I was using Internet to search something and out of curiosity searched for a word 'Hemangioma'. Hemangioma was the word around which my life revolved for 24 years. It was that ailment which changed a month old child's life forever. Amazingly, search came up with several results. One site listed a forum of people suffering with a similar problem in United States of America. It was PWS forum. I became a member of this forum with the hope of finding some hope. From the description what people used to give about their ailment, I thought my ailment was same as theirs and I thought it was PWS- port wine stain.
Internet connection from home was horrible at that time. It used to disconnect after every minute. Connection in the office wasn't available any more since I had moved to some project and work became hectic. But, checking forum's emails was an important part of my day. It didn't matter, if I had to stay awake all night and sleep in the office. Curiosity to know the ailment and to know the treatment kept on increasing. In July, 1997, I made my own web site, using MS Word, to discuss about my specific problem. The web-site was distributed in the forum. After long period of waiting, my luck hit the jackpot. My email was picked up by somebody who had already changed so many other lives earlier and I guess I was going to be another privileged one. It was my goal but it was lot of work on behalf of Linda Shannon – the executive director of Vascula Birthmark and Hemangioma Foundation to make me reach to that point. Even though I was on the other side of the world and she was busy with her work, she never let me loose hope. She continued working with my case, till she found something .And one bright day, I got an email, which was going to change my life once again. It said something like this "Come to America. We have hope for you. Your life will be changed in 15 days". The email was sent by Linda Shannon. For me and my family, it was one of the brightest Sunday mornings. We had found a hope several thousand miles away from our house.
Now, it was the time to make the decision. Parents were worried. They wanted the best for their daughter. But, sending their daughter to a totally new world and amongst totally new people was a very difficult decision for them to make and it also meant a lot of expenditure. Daddy somehow managed and decided to get two tickets -one for him and one for me. He is a very caring and responsible father. And I was always in parental care. How to handle life on my own, I had know idea. He was concerned about that and didn't want to just throw her daughter in totally strange environment. But somehow, I decided to take this journey on my own. A saying goes, when GOD gives the tough times, He gives the courage to face them. So, I believed if GOD has shown us this moment, He will take care of the rest. We had a long conversation. Parents were pretty nervous. But, when I didn't change my plan, they also decided to put their faith in good Lord.
I entered United States of America, my dreamland on 4th of Dec, 1998. I landed in Washington DC, stayed there for couple of days and then flew in Little Rock. According to Linda's arrangement, I was supposed to stay at Ronald McDonald house, which is a house near Arkansas Children's hospital, for patients who can't afford themselves. But, fortunately or unfortunately, the house was occupied, the day I arrived here and Linda made some other arrangement for me. She called this lady whose name was Lori to pick me up from airport and keep me with her during the time of my surgery. Lori was a recovering alcoholic and had a good history of taking and selling drugs. Linda was unaware of this fact. And as the saying goes again, GOD can use anybody when He wants to for His purpose. I stayed with Lori for around 15 days. She took very good care of me. I got 2 very painful but unsuccessful laser surgeries done. Once again in my life, Doctor was confused and was ready to give up. Once again my extensive Hemangioma was puzzling a very highly specialized doctor – Dr. Waner. He wanted to help but needed sometime to determine course of action to combat this ailment. He asked me to go home and come back later. I refused. I didn't want to go home because I knew if there was any hope it was here and if I go back I wouldn't come back again. I knew coming here was such a big step that if I went home failed, I'll never have the courage to try anything else. I guess that time GOD saw my resolve and generated so much generosity in an Angel's heart that she decided to keep me with her till my treatment was finished. That Angel was Helen- a very strong, very good hearted and very good natured person. She told Dr. Waner that I needed to be treated before I could go home. She told him that I had taken too big of a step to go back as I was. That was the day when 3 people decided to put their commitment and patience on God's one of the hardest test. If I am correct, I was one of the most complex cases for Dr. Waner. There were lot of times when he could be seen frustrated with the failure of treatment on me. But, there was no looking back.
15 days turned into 15 months then around 2 years but he was ready to try everything possible under his control to accept this challenge. That was the hardest time for me too. I had to undergo innumerable and very painful laser surgeries just to make myself look beautiful from outside. I remember every time strong beam of laser used to hit my face, I used to ask myself- why people give so much importance to the outside, to the physical beauty and why I've to undergo something so difficult and so painful for their failure to accept the God's creation, in its own form. To stick to my resolve and to wait for my dream to come true, I had to risk my career- career which was a symbol of independence and confidence for me, for which I had looked forward my whole life. My friends were rising in their career. They were making their future in computer business and I was making my face. Lot of time, it appeared to me that I suffered all my life because of something and now I was lagging behind because of the same thing. Initial days I used to be very impatient. I wasn't prepared to stay that long, so far away from my parents and at the mercy of other people. Although that love and affection was pouring down on me like anything but it was too much to handle for my self-respect. I wanted to go back and start my so called abnormal but in a way more normal life than what I was going through. But, every time I wanted to go back, I thought of Dr. Waner, who had challenged himself to treat my hemangioma,, my parents whose child had left them for 15 days and hadn't come back yet.
I thought of those days when I had undergone several other surgeries in India and it was all in vain. I thought of my father's smiling face and stern faith which was not going to be shaken by even the hardest challenges in his life. I thought of my Mom and sisters who were waiting for their part to come back home looking beautiful. And I thought of my Helen, who took such a big resolve, such a big responsibility to take care of a total stranger. It was not just financial responsibility, as some of you might think. It was more than that. For those days, she was my best friend. She knew exactly what I was going through at any time. She knew what frustrations I was going through and she was the only one out of this whole world, who sat there by my side for hours listening to my confusions, my frustrations even when I didn't want to talk to anybody or share with anybody, not even to my parents since they were so far away. She was the one who took off from her work to take my for my appointments, waiting for hours at the reception for doctor to come and just say – "It is working now' Every surgery which I went through, I took the pain, but she helped everything in her control to relieve me from that. Hours at nights she sat by my bed, got up at in the middle of the nights to check my temperature, to change my bandages and to give me medicine and see that I was still alive. Every dream which I saw, she gave me the courage and support to achieve it. Besides her, her parents were also very supportive of my cause. In all the failures, her mother, who I call Granny, tried to teach me –'Rome wasn't built in a day'. My faith, my belief and my resolve got stronger each time my surgery failed and each time I saw the strong commitment of these people towards me and towards my cause and I realized that I needed to hold on till the end. Besides Dr. Waner, there were 2 other very generous doctors who fought with me for this cause and very generously.
Dr Shewmake- a generous reconstructive surgeon and Dr. David Wilkes- a generous eye doctor. Dr. Shewmake came forward with his help when I realized that there was lot more destruction done to my face by Hemangioma which laser alone wouldn't be sufficient to cure and I got in touch with him through one family relative. When he read my story, he didn't even think twice before deciding to volunteer his services for the cure of hemangioma, for constructing a destructive face. He did 2 reconstructive surgeries to provide shape to my nose and to level the position of my right eye. Because of very delicate tissue, the first surgery of the nose didn't do that well. My stitches came loose and another surgery couldn't be done soon again. But, as others, he remained committed to his promise and provided another surgery when needed. He had reconstructed my nose very beautiful, if stitches wouldn't have come out, I would have got a very sharp nose. It is still much better than what it was.
I visited Dr. David Wilkes for my eye checkup since my eye lashes used to grow towards inside and they were troubling very bad. When he met me and my American family and when he found out my purpose of being in America, he decided to get rid of my eye lash problem. He did a surgery on my eye lid to prevent the treacherous eye lashes from growing. It really made my life easier because I don't remember even a single day passing by in my life when I didn't sit down with the forceps to pluck those eye lashes and I don't remember even a single school exam which I didn't give without keeping my hand over my right eye and giving the exam using one hand.
Last 4 years have resulted in a very strong bond of love between me and this family and between both families- Indian as well as American. In this period, I have undergone over 25 laser surgeries in different portions of my face, 4 reconstructive or plastic surgeries. They introduce me to everybody that I am their adopted girl from India. For the first time in my life, I care for somebody as much as I care for my parents. We laugh together and we cry together. In these years we have gone through so much good and so much bad times and so much together. If I go somewhere, granny tells me that this house sleeps without you. It seems like the heart of this house is gone. Everybody waits for me to come back. I am part of each conversation, each decision taken in the house. We have almost something similar to cultural exchange program. I have learnt to eat American food and slowly-slowly they have got used to the strong aroma of Indian dishes. There is no Hindu temple, so I've been going to Church with them since day one. It has been a very interesting experience to see that people in different corners of world believe in some form of GOD and it is so amazing to realize that GOD listens to us no matter with what name we call him. He just looks at the purity of the heart. As a Hindu, I used to have different names for calling him, now I've got another one- Jesus. In the last 6 years my life has changed drastically and face too. I am a totally new person both physically as well as mentally. And my big salute goes to people like My parents, Linda Shannon, Dr Waner, Dr Shewmake, Dr Wilkes, Helen and her family- people who don't know when to give up, who still think that people like me are a masterpiece in the making.
Today I have crossed several bridges of my life. 2 yrs back, I finally stopped having my surgeries and after a long struggle for my visa and job, I've finally got a job also. Not only that, my younger sister also, after several struggles, has managed to settle here. She is married to a nice person and they have good life. My youngest sister is also in the process of coming to US. I am sure very soon, she will be here too.
We have been able to let our mother come out of the country for the first time and see United States of America- a land of dreams for many. Lot of my relatives in India are letting their girls study higher, take their decisions on their own and rise higher. I never realized, in the struggle of making my face and making my life better, I was making lot of other people's life better. I became a role model for several girls and pride of several older people in my family. In coming years I wish to see myself doing something similar which Linda and lot of other people did for me and I wish to see the message and work of Hemangioma foundation spread across the different parts of the world and in some of the dark corners where there is some Kalpana waiting to get that ray of hope in her life.
I won't say that the process- 'In the making of a face' is finally over because this beautiful face, whenever looks at itself, thinks of several other faces, several other Kalpanas, who are still waiting to start their story of 'In the making of a face'. But, I am sure this story of victory will become a tribute to all those people, all those volunteers who are working around the globe to make other people's life better. I wish by reading this story we realize how important and crucial their job is and how commendable is their commitment.
Thank You,
Kalpana
----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------