Team Evelyn Kay is ready to participate in our 4th Turner Syndrome Butterfly Walk!  

Against all odds Evelyn was born on January 2nd, 2013.  She spent the first few weeks of her life dealing with low blood sugars in the nicu, which led to her diagnosis of hyperinsulinism.  Evelyn also had aspiration issues which led to another harrowing hospitalization where we learned she could not swallow thin liquids.  An NG tube was placed, and she was put on oxygen in order for her lungs to heal.  

The health issues continued to add up, which led the team of doctors to conduct genetic testing. We wouldn't learn of her Mosaic Turner Syndrome until she was 4 months old.  So far we know that she has an aortic bicuspid valve, which can be attributed to the Turner Syndrome.  Her chronic ear infections are also associated with the Turner Syndrome, she has had 2 ear tube placements to help with them.  As well as two ear drum repairs, one done more recently in June. We are hoping this last one will help improve her hearing. 

She has made great strides with her hyperinsulinism, we have been able to lower her medication doses! We are very hopeful that she is finally outgrowing this.  But we will continue to take it day by day, monitoring her blood sugars as needed.

When she was finally able to pass this liquids last year we were very hopeful that we would be able to eliminate her feeding tube sooner, rather than later.  It has not been a fast road with getting her to drink water.  We continue to work with feeding therapy, getting her used to drinking water and excited about it.  She has been more open to trying foods that would have been restricted before, foods that are "juicy" or melt.  She is enjoying popsicles and frozen treats.  Still not a huge fan of most fruits yet.  But we will keep trying.  

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 will be starting kindergarten in the fall!  She cannot wait to ride the bus with her brother everyday and attend school.  She just finished up her first year of dance, and loved it!  She will be starting her second year in the fall.  Evelyn is 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 August 18th in Plymouth.  We invite our family and friends to help us celebrate and support our girl.  PLEASE feel free to register and join us at the walk or donate in honor of Evelyn and 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.