HE NEEDED RAW CORNSTARCH EVERY THREE HOURS TO SURVIVE — NOW, AT 13, A BOY’S LIFE IS FINALLY CHANGING

For most families, feeding a baby every few hours is an ordinary part of early parenthood. For Jen McGowan, however, her son’s feeding schedule became a matter of survival.

Her son Trey was diagnosed with glycogen storage disease, a rare genetic metabolic disorder that can cause dangerously low blood sugar. As a baby, he needed raw cornstarch every three hours to help keep his blood sugar stable.

Now 13, the Ohio teenager has experienced a significant improvement after participating in a gene therapy trial, offering his family new hope after years of demanding medical routines.

Warning Signs From the Beginning

Trey was born with an extremely low blood sugar reading of 25 mg/dL and spent time in a neonatal intensive care unit in Las Vegas.

Although he was eventually discharged on Christmas Day, his medical journey was far from over.

Months later, his mother noticed that something was wrong. Trey appeared unusually distressed, and she eventually took him to the emergency room. His blood sugar had once again fallen to 25 mg/dL.

Further testing raised concerns about glycogen storage disease. Genetic testing later confirmed the diagnosis and established that both parents carried the condition.

Every Three Hours, Day and Night

The diagnosis transformed daily life for the McGowan family.

When Trey was approximately six months old, his mother had to give him raw cornstarch every three hours as part of his prescribed medical nutrition regimen.

For people with certain forms of glycogen storage disease, carefully managed cornstarch intake can help maintain blood glucose levels between meals.

But Trey’s condition remained challenging. His mother recalled that his blood sugar could move from a normal range to a hypoglycemic episode within just 30 minutes.

His childhood involved hospital visits, strict routines and constant attention to his medical needs.

A New Opportunity at Cleveland Clinic

After the family moved to Ohio, Trey began receiving specialist care at Cleveland Clinic Children’s.

Eventually, his mother learned about an opportunity for Trey to participate in a gene therapy trial called Genglycos.

The investigational treatment was designed to deliver a functioning copy of a gene to the liver, with the aim of improving enzyme activity and helping the body regulate blood sugar more effectively.

For a family that had spent years planning life around Trey’s condition, the opportunity represented an important new possibility.

A Meaningful Improvement, Not a Cure

Following treatment, Trey’s daily cornstarch requirements decreased.

Previously, he had needed as many as seven servings a day. According to his mother, his current intake has fallen to an amount equivalent to approximately 1,000 calories daily.

Although he still experiences occasional episodes of low blood sugar, they have become less frequent.

The treatment has not been presented as a cure. Trey continues to manage his condition, but the improvement has given him greater flexibility in everyday life.

A Mother’s Hope for Her Son’s Future

For Jen, the greatest reward is seeing Trey gain more freedom as he grows older.

She hopes that when he reaches adulthood, managing his condition will become less intrusive and that his days will not always have to revolve around medical routines.

After years of measuring time in three-hour feeding intervals, the family is beginning to experience what once seemed difficult to imagine: a little more room for Trey to simply enjoy being a teenager.

Source: PEOPLE, October 1, 2026. Reporting by Kayla Grant.