Turner syndrome and I met for the first time on a phone call in December 2009. I was at work, in my office, when the telephone rang. It was the genetic counselor from Children’s Healthcare of Atlanta gently explaining that they had found the underlying cause of Caroline’s medical problems… Turner syndrome (TS). Honestly, all I really heard during that call were the words: Turner Syndrome, infertility, and an organization called the Turner Syndrome Society of the United States (TSS). Three things about that day stand out in my memory: First, spinning in my office chair – round and round and round – trying to wrap my brain around what I had just heard; second, feeling completely deflated and overwhelmed; and, third, visiting the TSS website and immediately noticing a picture of a beautiful little girl with a butterfly (the symbol for TS) painted on the side of her face. Seeing that little girl with the butterfly on her face made me smile because, since birth, the theme of Caroline’s bedroom has been butterflies. On that very first day in December 2009, the TSS website was a beacon of hope and comfort as I slowly absorbed and accepted my little girl’s diagnosis.
February is Turner syndrome awareness month. Raising awareness of TS and giving financially to fantastic organizations like the Turner Syndrome Society are incredibly important to me for several reasons:
- Caroline is my “1 in 2000”. TS can come with a host of various medical, educational, and social challenges. It doesn’t define her, but it does and can present unique challenges throughout every stage of her life.
- I want the best for every girl and woman with TS. I want them to have access to the best medical and educational resources. I want the researchers to keep on researching; the doctors to keep on doctoring and supporting; the givers to keep on giving; and the parents and caregivers to keep on making their voices heard in their local communities and beyond to affect change.
- Throughout the years, great strides have been made in the research and medical communities because those before us did all they could do to bring awareness and attention to TS. More awareness, funding, and support are needed. I am just one person, but I will do all that I can do to help.
This year, I have decided to step out of my comfort zone and bring awareness in a new way… I will be raising awareness by running the 5K and 10K races during the Disney Princess Half-Marathon Weekend at the end of this month. I have been planning and training for this event for over a year, as this will be my first 10K race AND running both distances on consecutive days. I can’t wait to run in my butterfly-inspired costume, raise awareness of TS, and honor my sweet girl in a fun and exciting way!
Butterflies & Blue Skies 