His mom, Jen McGowan, still remembers the moment doctors told her he would need cornstarch every three hours \u2014 day and night.<\/p>\n
\u201cMany parents are just devastated. I was just like, \u2018OK, we\u2019re going to keep him alive.\u2019 That was the main thing,\u201d McGowan, 45, who lives in Dayton, Ohio, tells TODAY.com, her voice breaking with emotion.<\/p>\n
\u201cIn the \u201880s, they didn\u2019t live past 2 years of age, and I think that\u2019s what got to me. Like, we\u2019ll do whatever it takes. If he needs cornstarch, we\u2019re going to figure it out.\u201d<\/p>\n
![\"Trey](\"https:\/\/www.newsbeep.com\/us\/wp-content\/uploads\/2026\/09\/boy-glycogen-storage-disease-corn-startch-mh-01-09212026-02ddf7.jpg\")
Trey McGowan in the hospital.Courtesy McGowan family<\/p>\n
The family now lived by the clock, measuring precise amounts of uncooked cornstarch, mixing it with special formula and feeding Trey with it through his gastrostomy tube at midnight, 3 a.m., 6 a.m., 9 a.m., noon, 3 p.m., 6 p.m. and 9 p.m.<\/p>\n
Sleeping through an alarm or missing a feed meant Trey\u2019s blood sugar would drop to dangerous levels and he\u2019d go into a seizure. He required specialized care from doctors at Cleveland Clinic Children\u2019s.<\/p>\n
The boy had to be fed eight times a day until he was 4, then seven times a day when he was older. Now, the family is celebrating that he can survive with six feeds a day thanks to a newly-approved gene therapy for his disorder.<\/p>\n
\u2018Our Life Just Changed\u2019<\/p>\n
Trey was diagnosed with glycogen storage disease Type 1a, also known as von Gierke disease, a few months after he was born with extremely low blood sugar.<\/p>\n
Both of his parents carry a gene related to this inherited genetic disorder, though they had no idea. No one else in the family \u2014 including Trey\u2019s twin sisters \u2014 have the condition, which affects 1 in 100,000 people<\/a>.<\/p>\n GSD Type 1a means the boy lacks an enzyme that normally allows the body to break down glycogen \u2014 a form of sugar stored in the liver and muscles \u2014 into glucose, the body\u2019s main source of energy, according to the National Library of Medicine<\/a>.<\/p>\n A person with GSD Type 1a can\u2019t maintain blood glucose levels and will have low blood sugar within a few hours after eating, the American Liver Foundation<\/a> notes. <\/p>\n Treatment requires regular meals, including overnight, with a precise amount of complex carbohydrates that are digested slowly such as uncooked cornstarch or Glycosade<\/a>, an extended-release cornstarch that can be used to keep blood sugar stable while a person is sleeping.<\/p>\n \u201cI always say, I have a forever newborn,\u201d his mom notes about the mandatory regular feeds.<\/p>\n The cornstarch dose, precisely weighed and mixed with water, goes into his G-tube. It\u2019s also possible to drink it but after tasting it herself, McGowan describes the taste as \u201cvery chalky.\u201d<\/p>\n The enzyme deficiency requires a diet low in fructose, the sugar found in fruit, and sucrose or table sugar. Galactose and lactose, the sugars found in milk, must also be limited, the National Library of Medicine notes<\/a>. Trey is not supposed to exceed 5 grams of sugar at any meal, his mom says. For perspective, a banana has about 15 grams of sugar.<\/p>\n Infants require soy-based, sugar-free formula; children and adults must eat frequent, high-complex carb meals and protein on top of the cornstarch.<\/p>\n \u201cI was naive in saying, \u2018OK, well, he just won\u2019t be having a birthday cake at his first birthday.\u2019 There\u2019s a lot more that goes into it,\u201d McGowan says. \u201cOur life just changed.\u201d<\/p>\n GSD Type 1a is a \u201csevere disease\u201d that requires lifelong therapy with \u201cmeticulous adherence and planning,\u201d but many patients now reach adulthood without major complications, researchers note<\/a>.<\/p>\n Still, the sleep disturbances and loss of spontaneity have a deep impact on the quality of life, for the child and their family, they add.<\/p>\n Gene Therapy Reduces Family\u2019s Anxiety<\/p>\n Trey has regular feeds via his G-tube, but also eats two to three meals a day by mouth. <\/p>\n The eighth grader likes steak, chicken, hibachi and ramen noodles. McGowan makes sugar-free cakes for his birthday using non-sucrose sweeteners. He sometimes enjoys a zero-sugar candy bar and sugar-free ice cream.<\/p>\n \u201cLuckily, we live in such a keto-friendly world now, and zero-sugar this and zero-sugar that, that he hasn\u2019t had to make so many sacrifices,\u201d she says.<\/p>\n![\"Trey](\"https:\/\/www.newsbeep.com\/us\/wp-content\/uploads\/2026\/09\/boy-glycogen-storage-disease-corn-startch-mh-04-09212026-d10dda.jpg\")
Trey and his mom.Courtesy McGowan family<\/p>\n
![\"Trey](\"https:\/\/www.newsbeep.com\/us\/wp-content\/uploads\/2026\/09\/boy-glycogen-storage-disease-corn-startch-mh-02-09212026-fea9bc.jpg\")
Trey as a little boy.Courtesy McGowan family<\/p>\n