Meet Maureen, her son Oliver and family to learn more about what it’s like to live with Glut1 DS.

Like any parent, Maureen hoped for a happy and healthy child when she was pregnant with her son, Oliver. When Oliver had his first seizure as a child and medical tests couldn’t find the answer, Maureen’s hopes came crashing down. For the first year, Oliver had 20-25 seizures a day. At age five, he was officially diagnosed with Glut1 deficiency syndrome. Maureen works with him to find alternative ways to control his seizures, and he plays on the JV baseball team at school. Oliver doesn’t give up when it comes to limitations, so they “aren’t as big of a deal” as Maureen once feared.

Glut1 Deficiency Syndrome (Glut1 DS)

Glut1 deficiency syndrome (Glut1 DS) is a genetic disorder that prevents an adequate amount of glucose from getting to the brain. The body moves glucose into the brain through a ‘vehicle’ called the Glut1 transporter, which does not function properly in people with Glut1 DS, leaving the brain starving for energy.

As a result, people with Glut1 DS may experience seizures, delays in speaking, motor problems (difficulty walking, coordinating movement, balance, etc.) and learning difficulties.

Glut1 DS affects between 3,000 and 7,000 people in the U.S.

Other names for Glut1 DS:

  • Glucose transporter type 1 deficiency syndrome
  • DeVivo Disease

*These organizations are an incomplete listing of rare disease support organizations and are not controlled by, endorsed by, or affiliated with Ultragenyx Pharmaceutical Inc. The list is meant for informational purposes only and is not intended to replace your healthcare professional’s medical advice. Ask your doctor or nurse any questions you may have about your disease or treatment plan.