In November of 2008, Chris was diagnosed with a rare diesase~Glut 1 Deficiency Syndome. For the next few days, we became more upset as we learned there was no cure for this disease. There is no worse feeling – thinking there is nothing you can do to help your child. How could we just accept this for our son who has his whole life in front of him?
A few weeks later we stumbled across a group of parents of children who were also affected with Glut 1 and learned they had planned a conference for that year. Although we were too late to attend the first conference, we have attended every conference since. It is amazing to connect with other parents and unite our children with friends who are going through similar things. These parents were and still are determined to bring more awareness of Glut 1. These parents were and still are determined to find ANSWERS for their children. We then knew we no longer had to feel powerless.
By being a part of the Glut1 Deficiency Foundation and their mission, WE had the ability to change Chris’s future. We are proud that we were able to unite with other families and start this foundation together!
Please consider giving to help those with Glut1. It would mean so much to us!
The Love Some1 with Glut1 annual campaign is the primary awareness and fundraising event for the Glut1 Deficiency Foundation. It runs from February 14-28, Valentine's Day through Rare Disease Day, and it is an important opportunity to spread awareness and raise much-needed funds to help better serve the needs of the Glut1 community.
Please visit our website to learn more about Glut1 Deficiency and the work of the G1D Foundation.