Hey guys, thanks for visiting our page! Most of you are unaware that we have been fighting a health battle for Olivia. When she was almost 2 she had a seizure. And then another one 9 months later. At her age were were told that it was likely that she would grow out of it and were hopeful that she would. Although she hasn't had anymore seizures, she had another problem going on that was very concerning. She would have these episodes where it seemed as though her legs would just stop working. She couldn't walk or even hold her own weight standing. The episodes would last from 5-10 minutes and happened a couple times a month. Although we showed videos to multiple doctors we still had no answers for 2 years, that was until December 2018. Olivia was diagnosed with a genetic disease called Glut1 Deficiency Syndrome. This is where Olivia's brain does not receive Glucose (fuel) efficiently leaving her brain hungry. There are a lot of problems that can occur when your brain is left hungry. In Olivia's case they are ataxia (the leg episodes I mentioned), speech problems, cognitive delays, and trouble regulating emotions just to name a few. There is currently no cure for Glut1, only treatment. We started the Modified Atkins Diet this week (a lazy version of the ketogenic diet) that limits Olivia to 10 carbs a day. A banana has 24 carbs. Limiting her carb intake forces her body to switch from being fueled by Glucose to fat. Even in 6 short days we already see her getting along better with her sisters and being overall a more mild tempered happy girl! I am sharing all of this with you because Glut1 is rare with only a few hundred diagnosed around the world. However specialists believe that is is something that is very under diagnosed. So the more people that know about it, hopefully more can receive a correct diagnosis sooner and begin treatment sooner! If you can't donate that is okay, I deeply appreciate you taking the time to read our story. One more person educated about Glut1 is a win! If you do feel like making a donation, the proceeds go to raising awareness and for research for a cure for my sweet girl and many others.
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.