13-year-old boy with rare genetic disorder must eat raw cornstarch to survive (exclusive)

NEED TO KNOW

• An Ohio-based mother couldn’t imagine how “intense” her son’s life would be during his early years.

• Jen McGowan’s son Trey, now 13, was diagnosed with glycogen storage disease after dangerously low blood sugar sent him to the emergency room as a baby.

• Genetic testing showed that both of Trey’s parents, Jen and Rob McGowan, carried the rare metabolic disorder, which they ultimately passed on to him.

An Ohio-based mother couldn’t imagine how “intense” her son’s life would be during his early years.

Jen McGowan’s son Trey was born with extremely low blood sugar, at 25 mg/dL. Once stabilized, the newborn was transferred to Children’s Hospital Las Vegas, where he spent some time in the neonatal intensive care unit (NICU).

“Nothing at this point would have pointed us toward the diagnosis,” she told PEOPLE, explaining that her son was admitted to the NICU for a different complication at the time. “He was released on Christmas Day! (It was the) best blessing (and) Christmas present!”

Although McGowan describes Trey as a “really happy baby,” he was only at the beginning of his long medical journey. The following year, while the family was commemorating Good Friday, McGowan, who is also mother to twin daughters Taylor and Paige, now 19, noticed something was wrong with her son.

“He was unhappy! Something was wrong, and we couldn’t put our finger on it!” she remembers. “Around midnight, I wasn’t going to make him suffer anymore. I took him to the (emergency room) and his blood sugar was at 25.”

Doctors originally thought Trey might be suffering from spiral meningitis; However, when her lab work came back abnormal with elevated triglycerides and lactic acid ringing, a team member suspected she might have glycogen storage disease (GSD), a rare metabolic disorder that can cause frequent hypoglycemia, muscle weakness, and liver damage.

Through genetic testing, it was confirmed that Trey had the disease and that McGowan and her ex-husband Rob McGowan, 46, were both carriers. After receiving the diagnosis, the family’s life changed quickly. McGowan says they had to follow a structured feeding schedule, where every three hours she had to feed a then 6-month-old Trey raw cornstarch every three hours to keep him “alive and metabolically stable.”

“The younger years were more intense. He’s hypoglycemic, so his sugar levels depend on what he eats and how it affects him,” says the mother of three. “He would be in a normal range and 30 minutes later, (he) would have a hypoglycemic episode.”

“Trey has had his ups and downs throughout this diagnosis,” she adds. “Ever since we found out he (was diagnosed with GSD), he’s been asked to become a warrior.”

After moving to Ohio, the McGowan family was connected with Cleveland Clinic Children’s, where Trey began working with a dedicated care team. There were many difficult days, hospitalizations and trials, but his childhood was also marked by good days thanks to the specialized care he received.

McGowan tells PEOPLE that she and her family “adapted quickly” to the changes, adding that she ultimately wanted to do everything to keep her son “alive and thriving.” Eventually, McGowan says she was contacted by the hospital about a new gene therapy opportunity, called Genglycos, designed to deliver a working copy of a particular human gene to the liver in an attempt to restore enzyme activity and improve blood sugar control. The results were life-changing for the family.

“Any improvement in an incurable disease is a blessing,” says McGowan. “There have been some emotional ups and downs, especially following the gene therapy, which were just natural responses. He’s doing really well now! He still has some downs, but not as often and it’s just part of the diagnosis!”

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After receiving the treatment, Trey, now 13, was able to reduce the amount of raw cornstarch he had to consume daily. What started out as needing seven servings a day, the teen has now been able to reduce his intake to an amount equivalent to almost 1,000 calories a day. The big improvement allowed Trey to live a little more freely.

For McGowan, her son’s newfound freedom is all she can hope for. The doting mom explains that she just wants a life for her son where he doesn’t have to worry much about his health.

“I hope that as he gets older and becomes completely independent, he won’t have to worry too much and his self-care will be less intrusive,” she says, adding, “It’s manageable for him, and he doesn’t always feel like it’s all about the illness.”

Read the original article on People