We Love Vivianna!

by Susie DeJesus

Supporting: Love Some1 with Glut1 2022 for Glut1 Deficiency Foundation



On Valentine's Day of 2019, Vivianna was admitted into the hospital at 6 months old for seizures. My heart was broken to see my first baby being poked, prodded, and tested. We were given a diagnosis of Epilepsy and discharged with no reason why and no outlook into what the future would hold for my daughter. I spent countless days and nights worrying about her health, and always felt like there was something more than Epilepsy going on. Well, my "Mom Intuition" was right. In January of 2020 after completing a genetic test, Vivianna was diagnosed with GLUT1 Deficiency Syndrome. It is a very rare genetic condition that affects brain metabolism. Her brain was starving for energy because she cannot process Glucose as her main source of energy like me & you. There is no cure for GLUT1DS, we are only able to treat her with a very strict Medical Keto Diet.

On Valentine's Day of 2020, Vivianna was discharged from the hospital after spending 1 week initiating a strict Medical Keto Diet. That week in the hospital was the most heart wrenching experience in my life. To this day, it still remains an experience too difficult to speak about. However, initiating the medical keto diet has been the best thing for Vivianna, we have really seen her flourish!

Valentine’s Day of 2021, we celebrated Vivianna’s 1 year anniversary on the Medical Keto Diet with her new baby sister, Carmella. 

This year, Valentine’s Day 2022, Vivianna will be celebrating for the first time in school with friends and wonderful teachers! and we look forward in spending Valentine's Day 2023 with a new member of our family, a baby boy! 

Because of Vivianna's history, it is remarkable that the GLUT1 fundraiser starts on Valentine's Day each year! We are so thankful to have the support of the Glut1 Foundation to navigate the ups and downs that come with a rare disease diagnosis. My hope is that one day there will be a cure for Glut1DS. Thank you so much for your support - God Bless!

Each year, from Valentine's Day to Rare Disease Day, the Glut1 Deficiency Foundation hosts the Love Some1 with Glut1 campaignIt is an important opportunity to increase awareness and educate others about this rare disease while raising essential funds to help better serve the needs of our patient community through our mission programs.

In addition to our regular activities, we are working on some big and important goals for 2022

  • host our 9th family conference to bring families together to meet, share, and learn 
  • host our 2nd scientific convening for researchers and clinicians to exchange knowledge and ideas 
  • launch our Research Roundtable program to build a collaborative research network 
  • begin implementing and funding our newly developed patient-led Research Compass
  • launch a natural history study to better understand life-long patient experiences
  • expand our educational exhibits to reach and teach new audiences of medical professionals
  • create a new website to serve as a hub for information, support, connection, and hope

All of this year's campaign donations will be used to drive research progress and provide funding for projects in our new Research Compass.

Thank you for your part in helping us reach our goals and supporting our mission as we continue our work to bring help and hope to everyone, everywhere, who is affected by Glut1. 

Shine Like Some1 with Glut1

learn more about Glut1 Deficiency

from our brochure here

How would you like to support?