Kolter

Here's the star of this show. He knows no stranger, has a smile on his face daily, and never has a bad day. No joke. The only thing that makes him angry is when we do not get supper made fast enough or we've run out of popsicles or he doesn't get to ride in Daddy's pickup!

Kolter was diagnosed with bi-lateral, moderate-severe, hearing loss when he was about three months old. At that time, he also had many developmental delays which our doctors at the time could not define. In short, we were sent to Children's Hospital and Medical Center in Omaha to get in touch with a geneticist. Once that happened, we began testing our genetics in 2013. On November 25th, yes that's Thanksgiving day, our geneticist called and said that she was 99.9% positive that Kolter had what we now know as GMPPB related muscular dystrophy with dystroglycanopathies. I know it's a mouthful. To sum it up, Kolter has a rare form of congenital, which means he was born with it, muscular dystrophy. The gene affected is the GMPPB gene. With that said, it's all still so new to the medical professionals that we've become a part of the University of Iowa's research study on this type of disease.

In this life we've been given, Kolter has conquered eating, drinking, walking, and now talking. Kolter uses sign language to communicate and it has been AMAZING!