Complete Agenesis of the Corpus Callosum - More than a Diagnosis
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- Опубликовано: 13 сен 2024
- From Ethan's Mom:
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 doctor’s multiple times that our beautiful son wouldn’t walk, wouldn’t talk, wouldn’t show emotions, and would always be dependent of us. It took me a while to “grieve” before accepting this diagnosis.
But accepting it and sitting by doing nothing about it are quite different. We have been very proactive about getting Ethan all the therapy and resources that we had access to in order 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 is thriving in life!
He is able to walk/run with the assistance of a walker. He can talk! He speaks 10+ words and is able to 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 the impact The Little Light House has made in Ethan’s life and ours. Every member of this fantastic organization has played a major role in his early intervention. They are helping him with OT, PT, Speech, classroom skills, social skills, acts of daily living, etc. He has been able to achieve some of his goals and has an amazing amount of confidence. We know at the LLH he is accepted, he is loved, he is challenged, he is cared for and treated with the most care, and respect you can give to 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.
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My son was diagnosed with complete Agenesis of the corpus Callosum. The pregnancy was stressful. From the doctor giving us the option to terminate the pregnancy and not knowing what to expect. My son will be 2 in June. He is walking and talking better than my first son at his age. Don’t let the doctors put a limit to what your kids can do! Keep striving Ethan
This is amazing! Thank you for sharing!
At what month your baby hold his head please reply?
Ethan started holding his head up around 7 months.
There saying my unborn son has this same stuff it’s kind scary, to be honest!
@johnolsson3997
Receiving a diagnosis does come with a list of emotions and questions. One thing to remember is it’s just a diagnosis it does not define your child. The diagnosis is simply a part of them.
Ethan is 5 years old and by the grace of God he is able to do many things that we were told by doctors he would never do.
Where there is life there is hope and where there is hope there is life.
It’s different for every case, but Ethan is a brave lil guy! God bless him .
It goes to show that love comes from the heart and soul. ❤
I love Ethan ❤️❤️❤️
Can u guide me plz which type of treatment you take for ur son
At school Ethan receives occupational, physical and speech therapy (both feeding and communication).
Outside of school he receives occupational, physical, speech (feeding and communication combo), aquatic (which is PT in a pool) and therapy horse riding.
He loves all his therapist and his favorite activity is riding a horse. 🏇