BOY, 13, HAD TO EAT RAW CORNSTARCH TO SURVIVE — THEN A NEW TREATMENT CHANGED HIS LIFE

For most teenagers, growing up means spending time with friends, playing sports and enjoying more independence. But for Trey McGowan, even something as simple as going several hours without eating could put his life at risk.

The 13-year-old from Ohio was diagnosed with a rare genetic condition that makes it difficult for his body to maintain safe blood sugar levels. For years, his daily routine revolved around carefully timed doses of raw cornstarch — an unusual treatment that helped keep him alive.

Now, a promising medical breakthrough is giving Trey and his family new hope for a more normal life.

A FRIGHTENING DISCOVERY IN INFANCY

Trey’s medical journey began when he was still a baby.

According to his mother, Jen McGowan, he was born with dangerously low blood sugar and required treatment shortly after birth. Several months later, another frightening episode sent him to the emergency room.

Doctors initially struggled to identify the cause. Further testing eventually revealed that Trey had glycogen storage disease type Ia, a rare inherited metabolic disorder.

The condition prevents the body from properly releasing stored glucose into the bloodstream. As a result, blood sugar can fall to dangerously low levels, while the disease can also affect the liver and kidneys.

Genetic testing confirmed that both of Trey’s parents carried the genetic variant associated with his condition.

A DAILY ROUTINE UNLIKE OTHER CHILDREN

After the diagnosis, the family had to reorganize almost every part of daily life around Trey’s health.

Raw cornstarch became an essential part of his treatment because it provides a slow-release source of glucose. When taken according to his medical plan, it helps maintain blood sugar levels for longer periods.

During his early years, Trey needed doses approximately every three hours. His mother had to monitor his condition closely and ensure he received the right amount at the right time.

Even as he grew older, the condition continued to affect his independence. Managing his diet, monitoring blood sugar and planning around treatment could make ordinary activities more complicated.

For Jen, the priority was always to keep her son safe while giving him the opportunity to enjoy childhood.

A MEDICAL BREAKTHROUGH CHANGES THE PICTURE

A major turning point came when Trey’s care team at Cleveland Clinic Children’s connected him with a clinical trial for gene therapy called GENGLYCOS.

The treatment is designed to provide liver cells with a working copy of a gene needed for normal glucose regulation. It aims to help people with glycogen storage disease type Ia maintain more stable blood sugar levels and reduce their dependence on cornstarch.

Following treatment, Trey was able to reduce his daily cornstarch intake.

His mother told PEOPLE that he was doing much better, although occasional low blood sugar episodes remained a concern.

The treatment has not cured his condition, and continued medical monitoring is still necessary. Nevertheless, the improvement has offered the family something they had long hoped for: greater flexibility in everyday life.

A CHANCE TO LIVE MORE LIKE OTHER TEENAGERS

One of the biggest changes is that Trey no longer needs to wake up in the middle of the night for a cornstarch dose, according to Cleveland Clinic.

He is also gaining independence and learning to manage more of his own care. The teenager can spend more time playing baseball, attending school and enjoying time with friends without every activity being dominated by his treatment schedule.

For his mother, those seemingly ordinary moments mean everything.

The family hopes Trey’s story will raise awareness of glycogen storage disease and help other families learn about available treatment options.

A PROMISING STEP, NOT THE END OF THE JOURNEY

Trey’s experience highlights how advances in genetic medicine may improve life for people living with rare inherited disorders.

However, gene therapy is not a universal cure, and results can vary between patients. Trey’s doctors will continue monitoring his blood sugar and overall health to determine how well the benefits last over time.

For now, the 13-year-old is enjoying greater freedom than he had before — and his family is looking ahead with renewed hope.

Sources:

1. PEOPLE
2. Cleveland Clinic
3. Credit : McGowan family