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!

Updating our blog!

We are celebrating over one year of Glut1 blogging with a blog refresh. We are updating Drake’s Glut1 Story to include “what early warning signs to look for” and “what early interventions have helped”.

This past week I have been updating our blog!

You will notice it is newly organized, categorized and labeled. Wahoo! Hopefully this will making reading and searching this site easier. I’ve also added a navigational menu with pages that explain what Glut1 Deficiency is and what early signs to look for on the movement disorder side of this rare disease. Plus info on what the Keto diet is and a little about ourselves excerpt.

Thank you to all who have followed Drake’s Glut1 Journey so far, and thank you to those who have reached out to me for advice and support. We are so grateful that we are helping to spread the word about Glut1 Deficiency from a mild kids unique viewpoint.

We will continue to tell Drake’s story and add to his “Glut1 Journey”. And we will also continue to write about our experience of doing Keto on a kid long-term — what differences it has made along the way and what adjustments we will make over time. Along with hands on practical advice from a “Mom & Dad in the trenches” perspective.