Eddie turned 5 last December and is the baby of four. He has two older brothers, Landon and Jordan, and a big sister, Avery. He enjoys being outside and playing in the park, even if that means just running around. He also loves listening to Cocomelon and playing with his baby stroller.

Eddie started his journey with CTD in May of 2021 when he was 18 months old. That is when he had his first seizure. It was a very scary time for all of us and up until that point we all thought he was just delayed. Seizure meds have controlled his seizures this far and we are hoping it continues. He started therapy soon after he was diagnosed and has been working hard ever since.

Eddie took his first steps at 3-years-old and now he is constantly running and climbing on everything. He sees a speech, occupational, and physical therapist at school daily, and outside of school, to continue to help with his development. While progress is slow, he is making his own gains. It is a rollercoaster a lot of the time but we get through every obstacle thrown our way. He is the happiest little boy who gives the BEST hugs and kisses.

We want to continue to bring awareness to the CCDS community and help all those affected with these rare disorders. Thank you for helping support Eddie and those like him. Without your support, we would not be where we are with research today.