Team Evelyn Kay is ready to participate in our 5th Turner Syndrome Butterfly Walk!

Since this is her 5th year, I'm assuming you all already know her birth story and diagnosis. So let's do an update about how she is doing now.

Evelyn completed kindergarten and is now ready to move on to first grade this fall! It was a rough year illness wise, but it's usually hard for most kindergartners.  I was lucky enough to volunteer in her classroom, so I was able to meet all of the new friends she made.  Dad was happy to volunteer to go along on all of her school field trips, and she was so proud to have him with for them.  Her favorite subjects were art, music and recess. 

We knew someday that Evelyn may need a little extra help with her growth, and we determined this was the year for her to start growth hormone injections. She has been on them for a few months now and has done amazing.  We have honestly been blessed that she hasn't needed them until now. Having tall parents has its benefits sometimes. 

Evelyn has made great strides with her hyperinsulinism, she is off of the medication she has been on since birth for this! Evelyn was a rockstar and was able to fast safely for over 24hrs! Her labs indicate that she still produces more insulin than we would think if she had completely outgrown the Hyperinsulinism. But we will continue to take it day by day, monitoring her blood sugars as needed.

With Turner syndrome some girls require extra help with fine motor and gross motor skills.  Evelyn works with an occupational therapist, as well as a physical therapist to help with some of the skills she struggles with.

Evelyn is still micro aspirating on thin liquids. At this time her pulmonary Doctor would like us to limit her water intake by mouth. So we are still relying on Evelyn's gtube for hydration.  

Evelyn is still the strongest little girl we know.  Through all of her surgeries, hospitalizations, therapy and doctor appointments.  She continues to amaze and inspire us daily.  We are very proud of her.

The Annual Minnesota Turner Syndrome walk will be on September 7th in Plymouth.  We invite our family and friends to help us celebrate and support our girl.  PLEASE feel free to Register Here and join us at the walk or donate in honor of Evelyn to help the Minnesota Turner Syndrome Society Chapter reach their goal.

Turner syndrome in a chromosomal disorder wherin the second sex chormosome is missing or partially missing in girls.  Those affected can have a wide variety of symptoms including fertility and heart problems.  Evelyn is Mosaic, so she only has a partial deletion.  To learn more about Turner Syndrome please visit http://www.turnersyndrome.org/

Your donations will be put towards TS research and TS awareness.  We thank you for your support.