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| Abhinav Kedia : |
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Hi. My name is Abhinav Kedia . as of date I am 31+,5’8”,70 kgs and ataxic(SCA II).
I met chandu thru net and I must say he is 1tiresome worker. I was diagnosed with ataxia quite early,1994 but nobody in my family could understand it’s seriousness, future growth and it’s implications. My father, chacha, real sister all have ataxia. Chacha has no kids. My father has one elder bro and two sisters and 2 children. Till march,08 I was working with reliance petroleum but decided to stop working and be near my father. My greatest task right now is to 1. help my father lead a comfortable life. 2. convincing my mother that I don’t need. to work but rather be with papa. 3. enjoy life as much as I can. 4. help my mother & sister as much as I can and 5. fight ataxia in the best manner possible. Regarding point 5 I must say what we all need 2 do is to come together share our experiences so that we may emerge victorious in our efforts. Also let us keep in mind the primary reason for which we have come together and concentrate on that.
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| Chandu George : |
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Hello my name is chandu George i am basically nervous and a shy guy. From my childhood itself I never liked running as I easily got exhausted.
When I was 14yrs I came to know that my sister had FA of which I didn’t have any idea what so ever, when I came to know that the doctors also said there is a chance or possibility of other member in our family also getting FA,suddenly it struck in my mind that I would also have FA. Thus FA entered my body through my mind first. The feeling was such that if I took one wrong step or swayed by while walking I instantly would think it was FA. I went to school on bicycle and finished my schooling, then next came my college which was the toughest part of my life.
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The three more difficult things then were to deal with, writing, secondly to walk without wobbling or swaying ,thirdly was going to church every Sunday and receive Holy communion(holy bread) as i used to sway a lot while walking in the church. Due to my ignorance of FA I used to feel very sad, and deep inside would always pray
“Wished this FA had never come to me”. And always used to dream about it but sadly FA was the part of my life. and a reality, I missed many things my friends used to do then, later on I completed my graduation and now I am studying post graduation in English,.
Previously i used to be always sad until I started reading the bible I came closer to know” lord Jesus” after that my life has changed a lot and I started believing in the quote
(Think positive)
Today is going to be a great day!
I can handle more than I think I can!
Things don’t get better by worrying about them!
I can be satisfied if I try to do my best!
There is always something to be happy about!
I am going to make someone happy today!
It’s not good to be down!
Life is great, make the most of it.
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| Sumit Mehta : |
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Hello
My name is Sumit Mehta and I am a resident of Chandigarh zone. I am 25years of age. I amblessed with Muscular Dystrophy, though the mysterystill remains as it's Muscular Dystrophy or something else as I have never gone for formal diagnosis.
My education initiated at home by the help of kind and lovingneighbours. Then I went to a school and did my schooling still class VIII as a regular student.Since then, I have been doingstudies through distance education and latera certification course followed by Bachelor in ComputerApplications(BCA) from IGNOU which is just about to complete.Alongside that, I also completed my graduation in IndianClassical Music in the year 2003.I am extremely positive towards life. Of course without the support ofmy parents, family, friends and near anddear ones, this wouldn't havebeen possible.
I believe God always helps us in some way or the other.It's just that we have to believe in him and in ourselves.Through this website, I would like to request all the parents of suchaffected children and people themselves to come forward and attachthemselves to these organizations. These organizations are not workingfor any profits or income but they are meant to make the lives of suchpeople better. According to me, although MD affects muscular strengthonly but it is now emerging as a mental problem due to disappointmentand depression. If we canovercome these mental problems anddepression, we can nearly overcome MD as well.On that note, I wish everybody good luck for whatever you do in yourlives. I like to make friends. So if you wanna be my friend, feel freeto contact me at
sumitmehta469@gmail.com. Mywebsite is http://www.sumitmehta.co.cc.
Cheers.
Sumit Mehta |
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| VIJAY NIRMALA : |
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Hi I am Vijaya 29 yrs old. It was in my graduation, I was diagnosed with FA, something that was unknown to my family or me. Before getting diagnosed i didn’t know how to explain myself even if I did, they won’t believe me .I was embarrassed many times. People made fun of me. But i couldn’t do any thing. I couldn’t under stand why my body didn’t obey me .why couldn’t I help myself, do general or normal activities. It was in my senior college I couldn’t handle myself. I knew some thing was really wrong but neither my family nor my friends believed or understood my health problem. I had difficulty in getting down steps, waking was difficult, standing became almost impossible. So there were many difficult situations which are best forgotten. After series of tests I was diagnosed with FA. I was very glad to hear because I could finally tell what was happening with me.
That’s it, now my journey as a patient begins. I was fortunate to subject to all the series of medicines like allopathy, homeopathy, Ayurvedic, herbs etc.
Now I’ve accepted myself. Each day is a new day for me A gift, and live everyday happily to the fullest.
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| SWASTI WAGH |
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Hellooooooo……..I am Swasti.I am suffering from ATAXIA since 12 yrs.However the symptoms appeared at the age of 15 but the disease could not be diagnosed. After repeated checkups a neurologist Dr.Singhal (Bombay hospital), told me that I’ve “ataxia” which is an incurable and progressive disease. You can imagine how much shocking was this to me and my parents. If I had lost courage I would have not done anything in my life. But I decided to fight with the situation bravely. I continued my studies with same enthusiasm and completed my graduation. After graduation I had an eye surgery for retina detachment.luckly I got admission in M.Sc.in mathematics and completed it with distinction. My diversion towards studies kept me away from negative thinking. Today I am completely on wheelchair and as such unable to do any job, I give tuitions at home. It keeps me little active and busy.
I’ve two sis and I’m middle one (Sandwich) LOL. Both of my sisters are M.E in computer science and healthy.
My father is retired professor and mom is lecturer,
Daily I do some exercises such as stretching and breathing exercises.
I appreciate Chandu for his outstanding work. I would like to extend my full co-operation to him in the activities of SAMAG.
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Story of Great Fighters & survivors – Yamuna and Sunder Seshan |
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My name is Sreemathi Srinivasan, I have two siblings who are; fighting FA for more than decade. My older sister is Yamuna Seshan, a very beautiful, tall and fair . She is 37 years and is a Bachelors degree in commerce and very lovely person. FA has played a havoc in from her 15 years of age and today left her on a wheel chair , diabetic. She is person with immense determination and will power and there is no words to describe her enthusiasm about life. Inspite of all the physical help she needs she is a constant source of goodness and radiance about herself. I am her younger sister and in all walks of life I have great lessons to learn from her. She is a book of wisdom and person with lot of zest for life but unfortunately the genetic problem seems to overpowering her day by day
I have another sibling and words cannot describe him, he is most intelligent and good looking younger brother anybody can ask for. He is 24 yrs old and he is top scorer in school but unfortunately his deterioration has been rapid and FA has literally torn his physical body but still has not torn his spirit. Biggest tragedy in our lives is that he was studying correspondence for the MCA when he lost his vision we are thinking this might be due to being chronic diabetic but he had typhoid which has brought unending tears to all of us. He has accepted his life even though he made a brave front after completing his B.Com he worked in Honda company and his transition to Software was difficult but my parents were the pillar of support at all walks of his academic achievement but nevertheless he is what he is because of his intelligence and hardwork. He is on wheelchair too and lost his strength on both the extremities. But today we have not given up in life we are always hoping for a divine intervention to show us path to lead a peaceful life.
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| DEEPAK GURNANI : |
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MOM SAYS IAM SPECIAL
I get out of bed at around noon; I need to lie down for around 12 hours to reduce the swelling in my legs. With the help of my mum I get into my wheel chair and spend some time surfing the net and watching TV. I loved to read but now I get sever headaches.
I was good at my studies till this disease took over. I go for computer classes and am studying graphic designing. I loved playing football and cycling. These days I just watch the game and love watching my brother Gaurav ride his bike. I am very good with my wheel chair.
I do most of the grocery shopping. My mom has got me a credit card to pay for the stuff. We dine out and I go to shopping malls as well. Often I am the only wheel chair visitor everywhere I go.
My mom has taken Gaurav and I all over Europe and I have enjoyed rides at Disney Paris. They have great arrangements for people like me.I also have different pairs of spectacles.; I just started wearing a diamond ear stud. I love mobile phones, my Discman and computer games. I wish is to die in Spain –coz that is where I was born and where I spent the happiest eleven years of my life before this.
I have researched my condition.Friedreich’s Ataxia affects many different organs; I have cardio myopathy and suffer shortness of breath, chest pain, abnormally rapid or irregular heartbeats, and symptoms of heart failure. I also have paralysis of the leg muscles, difficulty moving my arms, and loss of sensation in my limbs. Neurological problems include difficulty speaking, reduced vision and hearing loss. Bony deformities of my spine and feet include scoliosis, deformities of the toes and foot inversion.
My mom has not hidden anything from me. I know my life is short and things will only get worse that is why I want to die now. I will enjoy life one day at a time, be happy with my mom and brother. I would urge parents with special needs kids to enjoy life with their kids to the fullest.
I am lucky to have a mom who does all in her power to keep me happy, positive and active, and a brother who like any sibling can be exasperating!.
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