Raising awareness and support to the ONLY organization open to helping those precious ones with Disorders of the Corpus Callom - the NODCC!
Our lives were completely changed on November 23, 2009. Just the week before, we had taken our Jayna to the children's hospital in Fort Worth, Texas for an MRI and EEG due to seizures she was having. Her seizures weren't a sudden thing as she had been having them since she was a year old. At that time, they were diagnosed as Febrile Seizures, which Katherine (Mom) had when she was an infant/toddler.
But these seizures were changing...not only were we dealing with the "Tonic–clonic seizures" but now we were dealing with the "Partial Complex" and had no idea what we were up against.
We will never forget the call...the doctor HIMSELF called. "Mrs. Curlee, first of all, Jayna is fine. She is healthy. What she has going on is not life threatening." Well that's a way to start off a comverstion!
We met with him, saw the MRI pictures and conferenced with him for an hour or so and walked away knowing that our lives would never be the same.
Our Jayna had Complete Agenesis of the Corpus Callosum, Epilepsy, ADHD and ERLD (Expressive-Receptive Language Disorder).
She is healthy! We could be faced with much more severe consequence of ACC, but we are so blessed to have a healthy child. We do have our challenges, but we know that "all things work together for the good for those that Love the Lord and are called according to His purpose." Romans 8:28. The Lord has blessed her as He has blessed us.
Now it's our turn to help those who are facing this disorder without any prior knowledge. We've learned a TON...and we're still learning! But together, we can raise funds to help other families build a knowledge base with doctors and teachers to make their child have a chance at a normal life.
This is the NEW NORMAL!