My name is Tamara and I was born on 05/11/1981, and I too have Beckwith Wiedemann Syndrome. Being from Australia and one of the first children with the syndrome, my family was not aware of the rare syndrome. When I was born I was 11 pounds and 8 ounces, the biggest baby that year, and suffered from low blood sugar levels which the doctor fixed before any damage was caused. I also had an enlarged tongue, earlobe creases, and my left side was bigger than the other. There were a lot of complications during the birth. Firstly, they had no idea that I was going to be that big, which to my 50 kg mother was a big issue. When I was being delivered they found that I was going to be too large to come out naturally, therefore, the doctor was going to break one of my collar bones to fit me through. However, before he had the chance to do this, I broke it myself. After I was born, they thought that I was paralysed, because I could not move one side of my body, it was not until my mother discovered a lump on my collar bone that they realised that I had broken my collar bone. I stayed in the hospital for a couple of months and
was released.

Looking back onto my childhood, it was both mixed with pain but also a sense that I was different from others, which was a good thing. From the outside you could not tell that I suffered from this syndrome, however on the inside it was very much apparent. From an early age I suffered from reflux and many kidney infections, and was at the hospital many times. The constant urine infections resulted in me bed wetting every night until I was about 14 years old. This was the most painful experience that I have had to endure. Having to worry whether I would wet the bed at a friend's house, and scared that somehow someone would find out my problem. My tongue also caused some problems growing up. In every photo that includes myself as a baby there is also my tongue. My parents would try and push it in and then quickly take the photo however my tongue would re appear quicker, in the end they gave up and just accepted that my tongue would be included into the photo. I went to speech therapy from about the age 5until bout 10, which has seemed to rectify the problem. Although my tongue does make an appearance every now and then, and sometimes when I talk fast my tongue gets in the way, the problem is not one that I should medically fix. My parents were strong believers that tongue reduction was the wrong thing to do, and many times doctor's would ask them if they wanted to get one done. I also believe that tongue reduction is not a good idea. I am so happy that my parents did not take away one of my many special characteristics that only some of us have, also it would also mean that I would lose my party trick of touching my nose with my tongue, it is very popular. The only characteristic of the syndrome would have to be my enlarged body. Luckily, no one can notice that my left side is bigger than my right side, however they can not escape my large shoulders and legs. Although, I am not fat, I am extremely big boned, which I have used to my advantage. Our family is a very sport orientated family which encouraged myself and my older brother (who does not suffer from the syndrome) to be active in sport. Being strong and athletic I was able to adapt quickly to each sport, and have since represented my state in athletics, javelin, and basketball. And throughout my childhood I have always excelled in all sports. This proves that having the syndrome should not disadvantage you in any way, you have to use it to your advantage. You have been built this way for a reason, so go out and find it. Academically wise I have not been disadvantaged either. I have always been an A student, and am currently enrolled at the University of Sydney (which is recognized as the best in Australia). At uni I am studying ancient history and English, and hope to one day to become a high school teacher. I used to hate what the syndrome had done to me, but I now know that it is a special gift that only some of us have. It has not deterred me from doing anything in my life so far and I believe that it has allowed me to mature faster than many others. I am gifted by that fact that my parents have loved and supported me throughout my life and have not discouraged me from anything. In fact, it has been quite the opposite, and although I am only 19 years old I have already been overseas twice and have seen around 7 different countries, including Italy, Greece, and Vietnam. At the moment life is good. I am getting good grades at uni, I have a great boyfriend, who wants to marry me and who understands who I am and even cries when I tell him of my life. I am planning to go overseas again this year and then the next, I have great friends who also know about the syndrome, and who even have there own problems. I have just finished seeing my kidney specialist who has assured me that my kidneys have not been damaged apart from a few spots on them. I have not wet the bed in over 5 years, and have not even had a urine infection I about a year. Next month I am getting my genes tested to see whether they can find anything that could cause problems or affect me or my children if I get pregnant. Even though I know that it is a 50% chance of my children having the syndrome, I am in no way discouraged to get pregnant. Although I don't want my children to go through some of the things that I have, I will be able to help them through it because I myself have had to go through it. To the parents of syndrome kids, all I have to say is that if you love your child with all of your heart, and do not treat them as if they were different, they will grow up to be a happy, healthy, intelligent, and vibrant person, who will be loved by many others. My mother has always said to me that because of this syndrome I have always been a thoughtful and extremely nice person who astonished teachers with my loyalty and friendliness to those who were different. And to the young generations of the syndrome, don't be discouraged by anything, and feel special because you are!!