My friends and family are quite familiar with the fact that I have a chromosomal condition, Turner Syndrome. I'm not shy about sharing that I have Turner Syndrome or its impact on my life. For those who may not be familiar with this condition, Turner Syndrome is caused when a female is missing the second X chromosome or has damage to the second X chromosome in all or some of her cells. Missing or having damage to such a large part of one's genetic makeup results in a wide variety of possible symptoms which range from the rather serious (heart conditions that require surgery) to the less serious but unique( my pinky toenail grows straight up). The two most common symptoms are short stature and infertility. Turner Syndrome is considered rare, occurring in approximately 1 in 2000 live female births.
If a girl does not show many outward signs of the condition at a young age then she may not be diagnosed until teens or even adulthood. There are many benefits to a girl with Turner Syndrome being diagnosed at a younger age as treatment and monitoring of health for the conditions that are associated with Turner Syndrome can start sooner and be the most effective. This is why I am so vocal about spreading the word about Turner Syndrome.
My story is a very fortunate one. I was diagnosed before I was born and had two amazing parents who took advantage of that and used their own knowledge and research to support me as I grew up. If you ever wondered why I am so short, it's not just the heredity. It's important to me that young women being born with Turner Syndrome, just like I was, have as much opportunity to thrive and more. It's also important to me that parents of girls diagnosed with Turner Syndrome have the support and resources needed to support their daughters. The Turner Syndrome Society of the United States(TSSUS) has been supporting research and support for the Turner Syndrome community for over 30 years and it's near and dear to my heart.
This December, I am walking down the aisle to say I do to the man I want to spend the rest of my life with. Phillip and I both have so much of what we already need and would like to bless others instead. As a Wedding "gift" to us we would like to ask that you help us raise money for the causes that are near and dear to us. Mine is TSSUS to continue the research and resource development done by this amazing group.
P.S Butterflies are the symbol for Turner Syndrome. It's common for women and girls with Turner Syndrome to be called or to call ourselves Butterflies.