A Cerebral Palsy Warrior

Kolton was born a seemingly healthy baby. I remember thinking he had great strength as an infant. He would kick his little legs with great might and he quickly earned the nickname “Mr. Mighty” from his Nana. We didn’t realize that it was actually the first sign that something wasn’t right. It wasn’t until Kolton was six months old that we began to notice that he was not yet rolling over or trying to sit up. His movements were different in comparison to other babies. By Kolton’s first birthday it had become apparent that Kolton was significantly developmentally delayed.

After a visit to his pediatrician, Kolton was referred to Children’s Mercy. He immediately began physical therapy, occupational therapy and soon after speech therapy. Kolton underwent an MRI, and various testing. Eventually Kolton was diagnosed with Periventricular Leukomalacia or in short Cerebral Palsy. The simplest of tasks were extremely difficult for Kolton. We watched him make progress for it to only stall and then regress followed by more progress. This cycle would repeat itself over and over again. Shortly before Kolton’s second birthday he experienced his first seizure and he was diagnosed with epilepsy. It was around this time that he also started to show signs of autism. It became apparent that Kolton did not quite fit the diagnosis of PVL and Cerebral Palsy. He was in his own little box and something else was going on. Kolton’s neurologist and developmental specialist suggested that he should undergo genetic testing. We agreed, and after what seemed like forever, Kolton was diagnosed with a rare genetic disorder. He was born with a partial duplication on his 5th Chromosome; 5q 14.1. The chromosome duplication was the cause behind all of Kolton’s symptoms.

Fast forward to today and hundreds of therapy appointments later. Kolton is one of the most loving and ornery 8 year old boys that you will ever meet! Kolton has had to overcome many obstacles in his life, from walking independently to self feeding. He uses gestures and a communication device to communicate with those around him. He needs help or assistance in most day to day activities, but he never gives up. We worry about Kolton’s future and the many unknowns. We know that he will always need some level of care even throughout adulthood. We try not to focus on the unknowns because he is so much more than his diagnosis.

Kolton is silly, and full of giggles. He loves to play with toys and listen to music. His favorite things are water, loud cars, and the car wash. In fact every trip to the car wash is just as exciting as a trip to an amusement park. At least in the eyes of Kolton. In fact, I wish we could all see life through Kolton’s eyes. He has taught us to slow down and to enjoy all of the little things. Kolton notices the smallest of details around him and all of life’s beauty. He will often stop to watch the wind blow through the trees or feel it rustle through his hair. He finds wonder in the sunlight reflecting across the window pane. He often likes to watch his shadow dance along the sidewalk. Sometimes he will find laughter in a raindrop splashing into a puddle. Other times it is the joy of a glistening water fountain. He sees the wonder and the beauty in the simplest of life. I can only imagine what it would be like to see the world through Kolton’s eyes. I believe it is full of joy and beauty because that is what he has shown us.

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