This precious girl of ours was given a body with Glut1 Deficiency Syndrome. I may not ever understand the reason she was given this unique life, but I do know that she is the most courageous and tenacious little girl I have ever known. God has sure blessed this world with quite an amazing little girl who knows how to make everyone smile, whether at the grocery store, while going on a walk, or in the car next to us at the stop light. She sure knows how to be goofy and super sweet to everyone she sees, and I watch as she lights up the world day in and day out.
With Glut1 comes many obstacles, much learning, and a lot of stamina. God has taught me patience, resilience, strength, courage, faith, and many other things during this last 6 years. Still, she lights up our world like we never thought could be possible.
Yesterday marked the first day of the annual Love Someone with Glut1 campaign for the Glut1 Deficiency Foundation. Without the foundation, we may not have gotten a diagnosis for Auri so early in her life. Without their research and personal support to our family, we would not have the knowledge of how best to support and love our sweetie.
Would you please consider giving a donation to the Glut1 Deficiency Foundation in honor of Auri? It would truly mean the world to us. Any amount is greatly appreciated; and I truly mean ANY amount. It all adds up and helps the foundation to continue their research and support for all of us Glut1 families around the world.
Many thanks and much love to you all ❤️
Each year, from Valentine's Day to Rare Disease Day, the Glut1 Deficiency Foundation hosts the Love Some1 with Glut1 campaign. It is an important opportunity to increase awareness and educate others about this rare disease while raising essential funds to help better serve the needs of our patient community through our mission programs.
In addition to our regular activities, we are working on some big and important goals for 2022
- host our 9th family conference to bring families together to meet, share, and learn
- host our 2nd scientific convening for researchers and clinicians to exchange knowledge and ideas
- launch our Research Roundtable program to build a collaborative research network
- begin implementing and funding our newly developed patient-led Research Compass
- launch a natural history study to better understand life-long patient experiences
- expand our educational exhibits to reach and teach new audiences of medical professionals
- create a new website to serve as a hub for information, support, connection, and hope
Shine Like Some1 with Glut1
learn more about Glut1 Deficiency
from our brochure here