Happy Rare Disease Day 2018!

The Glut1 Deficiency Foundation has been sharing   (Love) Some1 with Glut1  stories as part of an online fundraising campaign.

This campaign raises awareness of Glut1 and provides funding for programs, projects and services. I am happy to post that Drake’s story has been included in this campaign! Check it out on the G1 Foundation website.

Drake has a powerful and unique story to tell. But unfortunately, like other Glut1 kids, his pathway to diagnosis took several years — this needs to change! It is therefore extremely important to us to raise awareness of Glut1 Deficiency Syndrome and the non-epileptic forms of Glut1 that are currently vastly under-diagnosed — so hopefully, this pattern won’t be repeated for future patients. Plus we are showing how important and life-changing, the ketogenic diet is for mild Glut1 kids too; even if they don’t have seizures.

Check out the Glut1 community video. Drake makes an appearance at the 36 second mark. I think he is a natural in front of the camera!

Author: Debra Lane

Debra & Ken Lane maintain this blog to chronicle their son's journey of living with the rare neurometabolic disorder, Glucose Transporter Type 1 Deficiency Syndrome (Glut1 DS for short). And hope to raise awareness and understanding of the non-epileptic form of Glut1 DS. Drake’s Glut1 journey started at the age of 3 with episodes of Ataxia and Dyskinesia. Now at the age of 8 he is 2 years symptom-free — thanks to the right diagnosis and the ketogenic diet.

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