Our Story

Ethan was born in September of 2012. His delivery was healthy, despite having severe congenital clubfeet. His first 3 months were spent in a cast, followed by another 6 months of brace wear. He has had a total of 3 orthopedic surgeries to correct his clubfeet. He was a happy, smiling baby, but had developmental delays. He didn’t babble, and had difficulty with his fine motor skills, and wasn’t walking. He went to physical therapy for 6 months before he finally walked at 23 months. Ethan also struggled with fairly chronic respiratory distress due to his narrowed airway. We spent many nights with a nebulizer due to his constant wheezing anytime he had a cold or virus. We saw a pulmonologist who said Ethan’s airway was very small for his age, likely due to constant inflammation, (and genetic anomaly). Ethan also has very short, narrow ear canals, which lead us to two sets of ear tubes!

Our son’s neurologist referred us to see genetics. Cook Childrens Genetics diagnosed Ethan in December of 2015. We were very relieved to receive this diagnosis after speaking with many doctors stating that we would likely never know the cause of his disability. Ethan’s biggest challenges today are speech. He uses a lot of “approximations” and sometimes its very difficult to understand what he is trying to say. Ethan is currently a Benbrook bulldog kindergartener in the special needs inclusion classroom. He loves it and is learning new things every day! He’s a loving, affectionate boy and shows empathy to everyone he meets.

Seemingly simple tasks, are much harder when you have MED13L. Every new word is a welcome surprise. When I see him run, I’m still in awe, as before his last orthopedic surgery, I didn’t think was possible. He is just such a little superstar and I am just so proud of him.