Our Beautiful ButterfliesFebruary 01, 2012
Several weeks ago I had an idea - an idea to share with you what Turner Syndrome looks like. To show you that Turner Syndrome girls are gorgeous and amazing and come in all varieties... just like anyone else.
There is a video that the Turner Syndrome Society created that has the tag line, “I am the same as everyone else yet different than everyone else". I hope by viewing this video and seeing the girls below that you will truely come to believe this.
This project quickly became my passion. I have spent a large amount of my "free time" in the past several weeks, working on this project and learning more about these sweet girls and their mommies! I have been moved to tears many times, and I have been touchly more deeply than I ever thought possible. I learned that Lily and I are not alone, and it has made a huge difference for me. I'm beyond thrilled to share this with you today.
My hope is that you'll share this post as much as possible. Please post it to your facebook, tweet a link to it, email it to your family, friends, your local media. Together we can make a difference!
The butterfly is the Turner Syndrome symbol. The TSSUS chose the butterfly because the butterfly is feminine yet strong, every butterfly is unique, and butterflies fly on their own which is our hope for our girls. I think it fits so well because butterflies may at first glance appear fragile, but are truly strong and beautiful, just like these girls!
You, of course, know Ms. Lily Grace, my miracle baby and 4 month old girl wonder, but let me now share with you some of the other amazing beautiful butterflies that have Turner Syndrome.
Diagnosed with Turner Syndrome at age 4.
Sienna has a horseshoe kidney, short stature, and she is far-sighted - both parents wear glasses though!. She has no other physical symptoms and has a perfectly formed and working heart! Her mom says that her only worry is for her future fertility issues. Like any normal 5 year old playing with dolls does, she wants to be a mommy, and her mother doesn't want to see her heartbroken.
Diagnosed with Turner Syndrome by a chance amnio, Ivy showed no signs in utero.
Diagnosed at 5 months. Mackenzie is deaf and has some behavioural problems that often come as a factor with Turner Syndrome. Despite all this she is an amazing little girl who has just started nursery school 5 afternoons a week.
Diagnosed July 2011. Kelsey plays ice hockey (go Kelsey!) She loves the color pink, her stuffed puppy "Penny" and swimming in the summer. She also loves to eat pasta!
Caroline has Classic Turner Syndrome and was diagnosed at birth due to a cystic hygroma during utero, and her puffy hands and feet at birth. She is a true fighter. She is still getting a grasp on her gross motor skills because she had developmental dysplasia of the hips (DDH) (dislocated hip) that was not diagnosed until 4 months. She had 8 months of hip treatments in which the final three months were in a Spica cast. The cast went from just above her belly button to her ankles. Caroline loves pretty much everything as long as she is not hungry or sleepy. She loves to be outside, she loves her doggies, and she loves her mommy and daddy the most. Caroline's mom says, "Caroline is a true joy and an amazing little girl. It has been one emotional journey, but I wouldn’t change a thing. I am looking forward to seeing God’s plan for our little miracle."
Veronica was diagnosed with Turner Syndrome at 6 years old.
She has various medical issues-Long QT, IBS, recurrent upper respiratory illnesses and Aspergers. In spite of all this she is a fire ball of activity. Her favorite mode of transportation is somersaults everywhere she goes! She is a great actress and Drama Queen - friendly, loving and bubbly! Veronica loves to read and anything to do with science.
Alessandra "Ali" - 6 months
Ali has classic Turner Syndrome (45 XO.) that was diagnosed at birth. She loves to eat applesauce and bananas! Some of her favorite things that she loves to do are... SMILE, play with Mommy, Daddy, Papa and Mema and she loves, loves, loves to roll over! Her mom writes, "I am so blessed to call her my daughter/miracle!"
Josslyn is currently in Kindergarden. She loves to play with her dog and siblings. She wants to be a Veterinarian/Zoo Keeper when she grows up! Check out her mom's blog
Twins with mosaic Turner Syndrome. Often referred to as "my tinkerbugs" by their mom. They are your typical happy-go-lucky, social toddlers, they just happen to be smaller. They both like little people toys and mega blocks, The Wiggles, Mickey Mouse Clubhouse, and being outside and swinging in their swings. They are both advanced for their age in certain areas, so even though they may lack in certain areas they definitely make up for it elsewhere.