Last Update: April 22, 2024

See updates to “Contact – Mailchimp Signup Link” “Events – Epicure Fundraiser/Walkathon/Golf Tournament/Coast to Coast for CDKL5″

Jakob Ruest May 28, 2013 – November 23, 2016

Ottawa, Ontario, Canada

“Our memories of Jakob are his bright blue eyes, his contagious laugh, always smiling and was such a strong child who showed us true love and how to view life differently. Our struggles are how painful it was to watch him suffer every day, and as a parent, unable to fix it. How he would never be able to do the things that “typical” children could do, and watching friends’ children do what he couldn’t. Having a very sick child at a young age, made us grow up quickly and losing a child is the worst pain in the world. Our message for the future would be improved testing and continued research to find a cure.” mom and dad xoxo