Our Beautiful Butterflies

February 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. 

Sienna Rain - 5 
 

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.


Ivy - 18 months 

Diagnosed with Turner Syndrome by a chance amnio, Ivy showed no signs in utero.  
Her parents are happy they knew though, as she had a heart defect that came about a day or two after she was born and demanded immediate attention. She came home at 10 days old with a fixed heart!  She is now full of spunk, love and snuggles. She's funny and smart. She loves her tutu's, babies and hotwheels. Her mom says that they are "blessed and greatful for our little redheaded princess.."

Mackenzie - 3

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. 

Kelsey - 6

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! 
  
Sajda - 11 months

Sajda was born with a congenital heart defect - Pulmonary Atresia with VSD. She had open heart surgery at 5 days old. It wasn't until later testing that it was determined she had Turner Syndrome. She has the Mosaic form of Turner's Syndrome. So far she is doing great and is enjoying life with 4 older brothers. Her mother says, "She is our joy, our sunshine."


Caroline Bella - 14 months

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 - 9
 

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 Maren - 6

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


Emma Rayne - 7 months

Emma was a definite miracle and blessing to her family after a stillbirth (Emily) at 28 weeks and a miscarriage. Emma had hydrops and a cystic hygroma that resolved at 28 weeks.  She loves her Laugh and Learn school house clock and her little pink pig that attaches to her car seat carrier.  Her favorite thing in the world right now is her 4 year old sister Erika Shae.  She looks up at her and you can tell she already adores her.  Currently her day consists of physical therapy once a week to try to get her to sit up and visiting her Grandma Bollmer. She is a very curious child and it is funny to watch her watch people. She is also starting to become an avid cartoon and history channel watcher! 
Ainsley Grace and Aubrey Lynn - 15 months
 

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.
Ainsley is the more serious of the two and prefers to play quietly, she is so content reading books, her current favorite is 'Go, Dog. Go!' by Dr. Seuss. She walks around saying "go dog, go" all the time, then she woofs.  Her favorite part is at the end of the story when they go to the dog party because her mom sings "Who Let the Dogs Out" and she dances around. Ainsley has glasses, but doesn't really like to keep them on. 
Aubrey, "my tiny mighty", as described by her mother is definitely the clown of the two.  Despite all of the ordeals she has gone through she is one of the happiest little girls ever! She does have congenital heart defects, but she has loads of heart! Aubrey also loves to read and dance.  Her favorite book right now is Farley Farts, thanks to her adoring Aunts we own a book with farts in the title and that makes fart sounds.  If anyone says Farley both Ainsley and Aubrey start making raspberry sounds with their mouths.
Juliana Grace Rose
 
 Juliana has Classic Turner Syndrome 45x, diagnosed in utero with an amnio because of a 16cm septated hygroma and hydrops. She was born at 35.6 weeks on June 2, 2011.    She had CoA and hypoplastic arch repair at 3.5 days old.

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30 comments

  1. Beautiful baby girls!!! Thank you so much for posting this!!!

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  2. Thank you for sharing! I am inspired. My daughter is the 15 year old who starts and finishes the "Faces of TS" video. She is an amazing student, athlete, friend and daughter!

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  3. These girls are absolutley beautiful. They are such a blessing! I am sure God has great plans for each of them. They will continueto touch many lives! Thank you for sharing!

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  4. ty so much for posting thie the girls are beautiful x

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  5. Thanks so much, love all our TS Butterflies. Such a great way to spread awareness, our girls are perfect just the way they are

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  6. What beautiful chilren. Thanks for sharing.

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  7. Beautiful, beautiful babies! You mommies are such heroes in my eyes and in theirs too.

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  8. What special little angels :) Ivy made me really smile... I have a 2 year old girl called Ariana who is also a gorgeous red headed TS princess. Great work x

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  9. I'm so glad I found your blog. It's so hard to find anyone around you that has or knows someone with TS!!! Thank you for sharing, it really helps :)

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  10. my ts baby didnt make it to this world. it has been 5 yrs now. i wonder how it would have been to have her. children r angels! enjoy yours:)

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  11. Love this!!!! My miracle butterfly is 20 months old and it is so nice to get support and see others with TS!! I'm sorry to those whose didn't make it.

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  12. So gorgeous..my little one..AIla is 15 months and doing really well..she was our miracle after a failed ivf..we are soooo lucky and blessed...enjoy life!!

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  13. I lost my little girl with Turners Syndrome at 16weeks, I am so grateful to have got to hold her for that long and kiss her goodbye. I loved seeing all these beautiful girls that are all fighting still.xx

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  14. What beautiful children! Thank you for sharing. I am 18 weeks pregnant with a child with Turner's Syndrome. It is comforting to hear some success stories. :)

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  15. i have ts and i want to say beautiful girls, enjoy life and they r so lucky to have good parents that thy will be with them .

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  16. i know i have ts at 17 y ,because i have uneducated parents, bad ,sick thy abuse me i hate them a lot i wish they burn in hell .

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  17. Thank you so much for what you've written here and for being so involved! :) I was diagnosed two weeks ago with the mosaic form of Turner's after a lot of years of questioning. It's been so hard to find support and someone who really understands, especially seeing as how we Mosaic Girls seem to have had such different experiences! I've even started blogging about my experience in the hopes of reaching out. So thank you for what you're doing.

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  19. hi my name is sarah I have a daughter named nevaeh that has turner syndrome she will be 5 in may im currently pregnant and I'm worried that if the baby is a girl she will have turner syndrome also like nevaeh did any parent on here have 2 daughters with turners ive looked it up some say it is inherited others say its not

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  20. I just received the news that my baby has TS and the genetics counselor was good but I hate they told me about terminating my pregnancy. After doing some reading it stayed in the back of my head. Reading these stories of miracles has made see things differently and I pray that God will bless my child to make it to the final trimester and come into the world. I have a five year old that keeps asking where her sister is and she is motivation for me. Thank you for sharing these stories with us and giving me faith.

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  21. I'm 16 weeks, and my little girl has been diagnosed with Turner Syndrome. So far her ultrasounds have looked great, but the statistics are so scary. Thank you for this site. It's given me some much needed hope for our baby girl.

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  22. My 5 year old was just dx with ts... I have so many questions and I am scared but I have faith and hope. She will be starting the shots soon and I am heartbroken. I don't know how to explain this to her. How can I tell her that she needs daily shots

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  23. My 5 year old was just dx with ts... I have so many questions and I am scared but I have faith and hope. She will be starting the shots soon and I am heartbroken. I don't know how to explain this to her. How can I tell her that she needs daily shots

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  24. My 5 year old was just dx with ts... I have so many questions and I am scared but I have faith and hope. She will be starting the shots soon and I am heartbroken. I don't know how to explain this to her. How can I tell her that she needs daily shots

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  25. Thank you for all the stories.

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  26. Thank you for all the stories.

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  28. I'm 28, and was diagnosed with Mosiac TS when in 2001 when I was 12. This is beautiful. All these little butterflies made me smile.

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  29. My daughter ivy rose was diagnosed with turners when I was 19 weeks along. She's 5 months old now and full of wonder. I absolutely love seeing websites like this. These girls are amazing and beautiful, and there is no doubt in my mind that all of them will do anything they want to achieve in life.

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