Resilient Reece

Eleven years after being diagnosed with GLUT1 Deficiency Syndrome, Reece Jones is thriving and his symptoms are mostly controlled.  Prior to his diagnosis in 2015, he had endured movement episodes almost daily and often multiple times in one day.  Like so many other GLUT1 families, it was a long road to diagnosis.  The Rancho Cordova, California family saw multiple doctors in the Sacramento region before visiting specialists at Children’s Hospital Los Angeles, Stanford Medical Center, and University of California San Francisco.  Reece was diagnosed when he turned 8-years-old through whole exome genetic testing.

Reece has shared some of his thoughts about growing up and living with GLUT1:

What has it been like growing up with GLUT1? 

“It’s hard not being able to eat some things that I really want to eat, but I have to deal with it.” 

Reece has been on the ketogenic diet since February of 2015.  To help with diet compliance, he had a g-tube placed which is how he receives most of his fat.  

“It’s hard having to deal with the movements because I can’t do some of the things that I want to do, like going out to do things with friends or family.” 

Reece’s movement episodes have been mostly controlled, with some breakthrough episodes, through diet and medication.  Being flexible with plans has been a part of his life.  He’s had many teachers commend him on his resilience. 

How do you think your family has managed your GLUT1? 

“Our family has adjusted well and have come up with several different strategies to help calm down my movements.” 

Using a weighted lap pad has helped slow his leg movements.  Reece’s service dog would lay across his lap when he was younger to help with deep pressure, as well.

What is your hope for the future for the GLUT1 community? 

“To spread more awareness and try to find a cure.  I share because awareness helps me.”

What have you been doing since your high school graduation? 

“I started college in August and I’m majoring in Broadcast Journalism.  I’m liking school so far and I like all of my classes.  I really liked my TV Production and Radio Production classes that I took first semester.  This semester I really like my Broadcasting class.  I’ve created a news package talking about the Athletics opening weekend.  I went out to the ballpark and interviewed fans about what they think about the upcoming season.  Then I took all of the recordings and edited together the parts that I liked.  I also created a news package where I interviewed my Dad and filmed him at work (watch it here!).  It was really fun working on these projects.  My career goals are to be a play-by-play announcer for the San Francisco Giants or 49ers.”

What do you do in your spare time? 

“I like playing video games, especially Smash Bros. and Fortnite, and hanging out with my friends.  I like watching baseball, football and hockey.  I like to keep score when I watch Giants games. I also like to sing, play the drums, play baseball, play basketball, and go to used record stores.  At my graduation last June, I surprised my family and sang, “Time of Your Life” by Green Day.”

Reece is looking forward to seeing his GLUT1 friends at the conference in Asheville this summer. 

“I like being able to hang out with people who know what I’m going through.”