On January 26, 1996 our 3 year old daughter Katelyn JoAnna (Katie Jo) was diagnosed with Isolated Non-Compaction of Left Ventricular Myocardium. When we were given this news we were told that Katie Jo had one day to five years to live. We were told that a transplant would be the only treatment and that she would not be listed until she was “worse” and symptomatic. We are happy to say that Katie Jo is a happy 13 year old about to enter the 8th grade and until now she has been impacted only slightly by her CHD.

There have been regular visits with the Pediatric Cardiologist these last 10 years and for the most part news has always been positive. “No real change”. We’ve had different medications added and removed over the years to prevent many of the issues that come with this CHD.

At Katie Jo’s most recent visit we were told that her condition is worsening. This is news we always knew would come but we certainly were not expecting it this go around because she’s been so active and by all appearances “healthy”. We were told that her heart has been increasing in size and that it is not functioning as had been hoped.

As we gear up for more tests and learn our next steps we will continue to do as we have in the past and continue to watch Katie Jo live her life to the fullest and participate in the many things she loves like singing, dancing, and acting. As she is presented with obstacles we will be there with her adoring big brother Chris to guide her through.

Erin and Rob, proud parents of Katie Jo and Chris