Glut1 Deficiency Foundation
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Lee


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Lee was born at 36 weeks  and didn’t thrive like his older sister.  He was having febrile convulsions almost from birth.  At 3 years old he was diagnosed with autism yet he still had episodes which were unexplained.  At 7 he had a natural sleep eeg and was diagnosed as epileptic and put on medication.  Still the strange walking and talking episodes persisted.  At 15 years old we video recorded him walking and collapsing over and over again.  We went back to the neurologist at Evelina Children’s Hospital who stated that looks like Glut11.   He had a lumber puncture procedure and genetic testing which proved yes he has Glut1.   His doctor says his has a mutation not reported before.

Lee inherited the variant from his father who has the same mutation as Lee.

Lee has a movement disorder and dystonia.  We struggle with the diet as he was 15 when diagnosed, but he has made inprovements on Modified Atkins.
​
Lee is a happy child and a amazing part of our family xxxxxx and I love some1 with Glut1!

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Glut1 Deficiency Foundation
PO Box 737 
Owingsville, KY 40360    
​info@G1DFoundation.org

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Copyright © 2019 Glut1 Deficiency Foundation
  • Home
  • About Glut1 Deficiency
    • What is Glut1 Deficiency?
    • Key Terms in Glut1 Deficiency
    • About the Ketogenic Diet
    • Brochures
    • Professional Guide
    • Resources
    • Newly Diagnosed
    • Educational Video Project
    • Cognition and Learning
    • Research News
    • Recent Publications
    • Patient Registry
    • Patient Stories >
      • Stories >
        • Emily
        • Bobby
        • Lilly
        • Allison
        • Katie
        • Tessa
        • Justin
        • Whitney
        • Ryan
        • Erik
        • Pattygrace
        • Chris
        • Sam
        • Collette
        • Phil
        • Joshua
        • DeAndre
        • Matt
        • Jayden
        • Brittany
        • Macie
        • Braden
        • Dalton
        • Jordan
        • Joelle
        • Sabrina
        • Thomas
        • Haley
        • Reed
        • Ben
        • Parys
        • Ronnie-Louise
        • Colin
        • Nathan
        • Lee
        • Dominic
        • Raina
        • Dylan
        • Brayden
        • Elli
        • Jacob
        • Rian
        • Hailey
        • Olivia
        • Addie
        • Drake
      • Share Your Story
    • Videos
    • Materiales en Español
    • Family Recommended Specialists >
      • Recommend a Specialist
  • About G1DF
    • About the Foundation
    • Leadership Team
    • Medical Advisory Board
    • Scientific Advisory Board
    • Educational Events and Exhibits
    • Ways to Help
    • Research Grant Program >
      • Research Grant Award Recipients
  • News
    • Recent News
    • Foundation Newsletters >
      • Fall 2019
      • Summer 2019
      • Spring 2019
      • Winter 2019
      • Fall 2018
      • Summer 2018
      • Spring 2018
      • Winter 2018
      • Fall 2017
      • Summer 2017
      • Spring 2017
      • Winter 2017
  • Conferences
    • Conferences
    • 2021 Conference - San Diego
    • 2019 Conference - Washington, DC
    • Past Conferences >
      • 2017 Conference - Nashville
      • 2015 conference – Orlando
      • 2013 Conference – Houston >
        • 2013 Houston Conference Webcasts
      • 2012 Conference – Indianapolis
      • Conference Summary Reports
  • Get Involved
    • Ways to Give
    • Donate
    • Family and Professional Networks
    • Volunteer Network
    • Sign Up for Our Mailing List
    • Shop to Support
    • Love Some1 with Glut1 >
      • 2019 Love Some1 with Glut1
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate