Dylan is in the 8th grade and enjoys going to school at Katherine Edwards Middle School. He has epilepsy, body movement disorder, developmental delay, cognitive impairment, slurred speech and language. His expressive language and communication has improved so much this last year! Dylan has an infectious smile and Loves to be around people! He also loves to play VIP Soccer, Challenger Baseball and is starting the Swim Team for the Special Olympics. Dylan also Loves, to sing, dance, play with his cats, go to Knotts Berry Farm and so much more!! He is my Hero!!
My Honey was diagnosed with Glut1-DS in 2010. GLUT1-DS is a rare genetic disorder that affects the brain. He is missing the gene that transport the glucose (sugar) to his brain. We need the sugar for energy, if not our brain starves! Dylan now uses FAT for energy! Dylan is on a strict diet and is not fun. Especially, birthdays and holidays. There is no CURE. My son faces many challenges each and everyday. This last year has been hard for him medically. He has had a few big seizures and just has not been himself. Not being able to express how you feel is so frustrating for him. Dylan, had a bad movement disorder the other night and I felt so helpless. He did tell me to HELP HIM! It broke my heart! With that being said please help us with our fundraiser for research and education. Thanks for visiting Dylan's fundraiser page. Let's give Dylan and all the GLUT1-DS Family HOPE!!
We appreciate your Love and Support!
Much Love Always, Dylan & June Lipps
https://www.youtube.com/watch?v=E1JnhkK_avo watch Dylan in this video at 12:17 mark
Thank you for showing your love for Some1 with Glut1 and for helping us bring help and hope to the Glut1 Deficiency community.
Glut1 Deficiency is a rare genetic condition where glucose doesn't reach and fuel the brain properly, resulting in a wide spectrum of neurological issues affecting brain growth, learning, movement, speech, and often causing seizures. There are fewer than 1,000 people diagnosed in the world, but experts believe there are many, many more patients still waiting to be found. Because Glut1 Deficiency is so rare, many in the medical profession don't have the knowledge they need to diagnose and properly treat it.
There is a very effective treatment for most patients - a ketogenic diet, and the earlier patients are diagnosed and start treatment the better the outcome. As fortunate as we are to have the diet, it is not a cure, not a complete treatment, and it is not easy. We need more research for better understanding, better treatment options, and ultimately a complete cure.
The Glut1 Deficiency Foundation is working hard to bring help and hope to the Glut1 Deficiency community.
The Love Some1 with Glut1 annual campaign is our primary awareness and fundraising event. It runs from Valentine's Day (February 14th) through Rare Disease Day (February 28th), and it is an opportunity to spread awareness and raise much needed funds to help better serve the needs of the community. All donations help fund our mission programs for increased awareness, improved education, advocacy for patients and families, and support and funding for research.
some highlights our supporters made possible in 2017
Please help us continue our mission.
We can do so much more together than any of us can do alone.
please watch our special thank you video
Please visit our website to learn more about Glut1 Deficiency and the work of the G1D Foundation.