This is my handsome son Dylan. He had glut1ds. What that means is that Dylan is missing the gene that breaks down the carbohydrates and takes it to his brain via the blood brain barrier. His brain starves for energy. Because of that. Dylan is on a very high fat diet. He gets his energy from fat. Dylan was seizure free for over 3.5 years until last year. Now he has been seizure free from tonic clonic seizures since December 2, 2021. Thank you Lord! Dylan has limited communication. His receptive language is good but has difficulty with his expressive language. He has severe intellectual disability but is absolutely perfect for me.
Despite the daily challenges. My Honey is always happy and Loves to give hugs. Dylan continues to grow and learn. He has He just started special Olympics swimming and going to start Challenger Baseball soon. Dylan enjoys going to Knott's Berry Farm and spending time with his Uncle. Dylan also enjoys dancing and listening to music. He has an infectious smile and Loves everyone.
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