This Halloween season, I want to revisit a post from more than three months ago that originally appeared on GoFundMe. It has since raised more than $18,000.
“Grady will never taste a cookie, ice cream, cake, pizza, and all the other foods that contain carbs or sugar,” the post reads.
Not “never again,” just “never.”
At a time when so many of us are driven by our gluttonous need for sugar, a small boy, new to this world, has already been deprived of one of life’s simple pleasures.
You see, Grady Downs was recently diagnosed with GLUT1 Deficiency Syndrome, or GLUT1 DS. The GoFundMe page was created to help support the GLUT1 Foundation.
“Over the last month, Grady underwent many medical tests,” writes Ryan Downs, Grady’s father. “It was been the hardest few months of our lives and it seems our difficult journey is just beginning.”
There are currently no FDA-approved treatments for GLUT 1 deficiency. Instead, those with the condition must rely on a special diet that is high in fat and extremely low in carbohydrates. That’s because, with GLUT1 DS, the body can’t get glucose to the brain and the brain essentially starves as a result. Cognitive and physical development suffer.
The idea behind the special diet is that, by depriving the body of carbohydrates, the brain will bypass its reliance on glucose and instead turn to fat as its main energy source.
Known as the ketogenic diet, this approach has been shown to help alleviate some of the symptoms of GLUT1 deficiency, including seizures and trouble walking or talking.
If you’re interested, it’s still possible to donate to the Grady Downs GoFundMe page. You can also donate directly to the Glut1 Deficiency Foundation by clicking here. Beyond money, however, Ryan Downs asks for something more personal:
“If you cannot donate (and even if you can) please say a prayer for my family. We all need it.”
As you and your loved ones enjoy the holidays, just keep in mind that not everyone is so fortunate. Be thankful for what you have and supportive of those with less.
Besides trick-or-treating, how could someone with Glut1 Deficiency and on the ketogenic diet celebrate Halloween? Share your ideas below!