Emmitt - Ohio

Hi, I'm Emmitt and I am 2.5 years old! I was born at 37 weeks gestation and very tiny, only weighing 4lbs 2oz. My mommy had a very normal pregnancy and never felt sick. The only abnormal finding while she was carrying me was upper normal ventricle size in my brain. They took me early because I stopped growing. Mommy and Daddy fell in love with me and my beautiful blue eyes.

When I was 4 months old, my family noticed that I wasn't reaching for toys or tracking objects or people with my eyes and they were concerned. After multiple tests (vision screening, MRI, CT, lumbar puncture, blood work, ultrasound, urine analysis) it was concluded that I was born with congenital Cytomegalovirus. The MRI found tiny calcifications in my brain which was from an infection some time ago that affected my brain. The MRI also showed what's called Polymicrogyria, which means many tiny folds of brain matter. A portion of my brain didn't form correctly, which is found commonly with cCMV cases. A urine analysis confirmed the diagnosis. This means that mommy contracted a virus while she was pregnant with me and her body passed the infection to my growing brain, causing it to not form properly.

Because of cCMV, I'm not able to control my body. Mommy calls it Cerebral Palsy. I also have seizures, eating issues, cortical vision impairment, and asthma. I wear AFO braces on my feet and legs to hold my feet in the proper position for walking and standing. Because of my vision issues, I am required to wear an eye patch 2 hours a day to force me to use my left eye. It takes a lot of practice for me to learn simple tasks like holding a sippy cup, but I'm one determined boy! I can navigate around the house some with my gait trainer and I love when people hold me in front of them and let me walk on my own! My parents feed me mostly puréed foods, but am learning to eat more solids and have to have my thin liquids thickened to nectar consistency or I have silent aspiration. I haven't said any words yet, but I'm REALLY good at communicating with adaptive switches and expressions.

Doctors and therapists don't really know what to expect for me in the future as cases like mine are all so different. I enjoy getting hugs and kisses from my cousins, watching Mickey Mouse Clubhouse, riding my trike, looking in the mirror and swimming! 

- Shared by his mother, Kelsie