Ethan was diagnosed with Complete Agenesis of the Corpus Callosum at two months old, missing the brain center connecting hemispheres due to a spontaneous gene mutation. Despite doctors’ predictions, his family proactively sought therapy and resources. Placed on the Little Light House waiting list, Ethan thrived with God’s presence felt in the school. Now, at four and a half, he walks with assistance, talks, and expresses love, joy, and curiosity. Little Light House’s impact is profound, aiding his development in various skills. Ethan’s journey embodies the extraordinary, reinforcing the specialness defined in the Bible every day.
We received Ethan’s diagnosis when he was two months old. His primary diagnosis is Complete Agenesis of the Corpus Callosum. In other words, he is completely missing the center part of his brain that connects both the right and left hemispheres. Through genetic testing, we learned that one of his genes spontaneously mutated in utero, and that is what caused the disorder.
We were told by doctors multiple times that our beautiful son wouldn’t walk, wouldn’t talk, wouldn’t show emotions, and would always be dependent on us. It took me a while to “grieve” before accepting this diagnosis.
But accepting it and sitting by doing nothing about it is different. We have been very proactive about getting Ethan all the therapy and resources we had access to to provide him with the best possible quality of life. We put him on the waiting list at the Little Light House when he was two months old. From the first time we walked into this school, we felt God’s presence in that building.
We believe God created Ethan perfectly in His image and for His glory. He is now four and a half years old, and I am happy to share that he thrives in life!
He can walk/run with the assistance of a walker. He can talk! He speaks 10+ words and can communicate through hand/physical gestures. He also has his own LAMP device and continues to improve in communication. As for emotions, he shows happiness, joy, curiosity, interest, and above all, LOVE. He loves music, dancing, and playing shadow puppets with his hands. He brings joy to all with the gesture of a gorgeous smile and one simple word — “Hi!”
Our family will forever be grateful for Little Light House’s impact on Ethan and ours. This fantastic organization’s members have played a significant role in his early intervention. They are helping him with OT, PT, Speech, classroom skills, social skills, acts of daily living, etc. He has achieved some of his goals and has a fantastic amount of confidence. We know at the LLH, he is accepted, loved, challenged, cared for, and treated with the most care and respect you can give a person.
While it is true that most of our attention is on Ethan, it is remarkable how he has GIVEN us reinforcement of the Bible’s definition of special. — “surpassing what is common or usual; exceptional; distinct among others of a kind.” Every day, in every way, that describes Ethan Howard Lewis.
