Dylan aka "DJ"

by June Lipps

Supporting: Love Some1 with Glut1 2020 for Glut1 Deficiency Foundation



This is our annual campaign to raise money for the foundation.   These funds help with research, awareness, educating, patient advocacy and ultimately a finding a cure someday.

Dylan has a rare disease that affects his brain. It is called Glucose Transportor  Type 1 Deficiency Syndrome. Dylan is missing the gene that breaks down the carbohydrates and takes them to the brain via the blood brain barrier.  Without that gene energy is not supplied to the brain. It leaves the brain starving for energy.  Dylan gets his energy from the second source of energy which is Fat. He is on a high fat, low carb diet, Modified Keto Diet,  his body is now using fat for energy.  Dylan, also has Epilepsy, ataxia (unable to walk at times, i.e. drunk walk) movement disorder (unable to control his body, i.e. like a fish out of water) Epilepsy, severe Intellectual Disability, major speech delay and other medical issues.  He sometimes will need to use his wheelchair due to the lack of energy.  Dylan has been growing and learning everyday.  Some days are more challenging but we get through them with Gods help. 

Dylan loves to dance, sing, go to Knott's Berry Farm, the park and bowling.  He also is involved in alot of sports.  He participates in Special Olympics Swimming, VIP Soccer, and Challenger Baseball.  Dylan is a very Happy young man.  He has an infectious smile and Loves everyone!   

I have to say this is by far the hardest job I have ever had but the reward is nothing but Love from my Honey!  I Love my son!  He is the reason I breathe!  

Please donate if you are able to.  No amount is to small.  Please help my Love and all the other GLUT1DS kiddos.  We appreciate all the continued Love and support. Much Love to all 


**This picture of my was at "A Night To Shine"**

The Love Some1 with Glut1 annual campaign is the signature awareness and fundraising event for the Glut1 Deficiency Foundation, running from February 14-29, Valentine's Day through Rare Disease Day. It is an important opportunity to educate others and raise much-needed funds to help better serve the needs of our patient community through our mission programs for increased awareness, improved education, advocacy for patients and families, and support and funding for research.

Thank you for helping us reach our goal and supporting us as we continue our work to bring help and hope to everyone, everywhere, who is affected by Glut1.  You make our mission possible.

learn more about love

messages from the heart of our community

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please visit our website for more information

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