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Family Meeting in Argentina

11/29/2017

 
Vivian Mathis provided this wonderful summary of the family meeting on November 17th in Argentina.  Our gratitude to Jimena del Azar for the translation help as well.
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It is true that all kinds of get togethers and gatherings of families who have a family member that has some sort of pathology are special, but I am certain that not all of them reach people’s hearts like the ones for GLUT1 families. Moms, who see each other once a year, locked in warm hugs; teary-eyed Dads full of emotion because they do everything they can and more; kids and teens that give each other shy looks as they know of each other’s struggle; uncles, aunts and grandparents always offering support and encouragement, and even though they may not know exactly how to help, their love is immense; as well as a great team of committed professionals who witness it all and are filled with emotion knowing that every second they devote to giving patients with GLUT1 a better quality of life is well worth it.

Amidst all these emotions, last November 17, the 2nd Meeting of GLUT1 Families took place with the support of the Nutrition Services Department of the Garraham Hospital. Nine children met, some for the first time, together with their parents, siblings, aunts and uncles, grandparents and friends in the Education Centre at the Garraham Hospital in Buenos Aires, in order to share a day to exchange life stories and experiences, as well as news regarding the illness and its treatment with the Ketogenic Diet.

It was a federal encounter as there were families from different cities all over Argentina; families from Santa Fe - who were there for the first time and left their mark as the biggest family and by bringing with them wonderful Glut1 T-shirts - from Bariloche, and Buenos Aires. The meeting also counted with the special participation of Daniela, who came with her mom from Santiago de Chile so as to support the Argentinian families.

There were questions, answers, discussions and moments of pure emotion, as when Daniela explained how she lives and experiences the illness as a seventeen-year-old. She offered encouraging words for both parents and children. The same heartfelt connection was present when her mom, Claudia, invited all family members to consider “seeing the person rather than the illness”, or when Daniel, Juan Pablo’s dad from Buenos Aires, encouraged everyone to work harder to ensure the kids are not invisible.

Probably every single moment will be forever held in the hearts of each of the people who were there, and everyone feels that they can do something to spread the word about Glut1 Deficiency Syndrome so that more children can be diagnosed on time and thus receive the appropriate treatment.

During this meeting it was announced that the next meeting will take place at the beginning of June also at the Garraham Hospital, and Dr. Klepper’s attendance was confirmed as he will be in Argentina to meet with other professionals and families thanks to the support of the Glut1 Deficiency Foundation.

It is important to point out that B-Life also supported this meeting, and, together with Nutrition Services from the Garraham Hospital, they were in charge of serving the children and teens delicious Ketogenic meals. In addition, Nutricia was also present with brochures and information. A lot of family members and friends also participated with gifts that sealed and proved their love for someone with Glut1.

A special note of thanks must be added from all the families to Dr. Marisa Armeno from the Garraham Hospital for her constant and unwavering support and her commitment to learning more about this illness.


Take a deep breath, live, love and hope.

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Glut1 Deficiency Foundation
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Copyright © 2021 Glut1 Deficiency Foundation
  • Home
  • About Glut1 Deficiency
    • What is Glut1 Deficiency?
    • Key Terms in Glut1 Deficiency
    • About the Ketogenic Diet
    • Newly Diagnosed
    • Research >
      • Research News >
        • Research Grant Program >
          • Research Grant Award Recipients
      • Recent Publications
      • Patient Registry
    • Resources >
      • Cognition and Learning
      • Videos
      • Resource List
      • Family Recommended Specialists
      • 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
      • Materiales en Español
    • Brochures
  • About G1DF
    • About the Foundation
    • Leadership Team
    • Medical Advisory Board
    • Scientific Advisory Board
    • Educational Events and Exhibits
    • Ways to Help
  • News
    • COVID-19
    • CZI Rare As One
    • Foundation Newsletters >
      • Fall 2020
      • Summer 2020
      • Spring 2020
      • Winter 2020
      • 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 and Events
    • Conferences
    • 2021 Conference - San Diego
    • Glut1 Gatherings on Zoom
  • Get Involved
    • Family and Professional Networks
    • Volunteer Network
    • UTSW Surveys
    • Sign Up for Our Mailing List
    • Ways to Give
    • Shop to Support
    • Donate
    • Love Some1 with Glut1 >
      • 2021 Love Some1 video
      • 2021 Love Some1 with Glut1
    • Million Dollar Bike Ride
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate