Kalli’s Story

Site created on April 22, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Kalli has a rare, genetic abnormality that affects the smooth muscle tissues of her body.  There are only 8 other people, who have had genetic testing, that have this particular abnormality.  We have already seen the affects of this abnormality in her eyes (congenital mydriasis -  a rare condition where the iris muscle does not develop and the eyes stay dilated) and her heart (surgery at two months of age for a coarctation).  This genetic condition was first discovered in the fall of 2017 after testing at Children's Hospital,  but has been affecting her since birth.   

At a routine checkup, during the summer of 2016, doctors began to notice an enlarging/stretching of her aorta.  (This happened to the other 8 people with this condition as well)  She has been closely monitored ever since and currently has restrictions as to what activities she may participate in.  

At a recent MRI follow-up, her cardiologist decided that it was best to proceed with full aorta replacement surgery this summer.   A surgery date of June 14th has been set.

Newest Update

Camp Odayin - more photos

Journal entry by Andy & Kim Ramaker —

Read More of the journal titled "Camp Odayin - more photos"
  • Kalli attacking the rock wall
    Kalli attacking the rock wall
  • Kalli on her horse "Walker"
    Kalli on her horse "Walker"
  • Kalli's new friend Ann
    Kalli's new friend Ann
  • Messtivle
    Messtivle
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