In Ohio, Jen McGowan reflects on the challenges she and her son Trey have faced since his birth. Despite characterising her son as a “really happy baby,” she acknowledges that the early years of his life were filled with intense medical struggles.
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Trey, now 13, was diagnosed with glycogen storage disease (GSD) shortly after his birth, which was marked by dangerously low blood sugar levels that required urgent medical intervention. When he was just a newborn, his blood sugar plummeted to a critical 25 mg/dL. Following initial stabilisation, Trey was transferred to the neonatal intensive care unit at Las Vegas Children’s Hospital, where he spent some time recovering from a different complication. McGowan recalls this period with a sense of relief, describing Trey’s discharge on Christmas Day as a significant blessing for the family.
However, the family’s struggle was far from over. As time progressed, McGowan began to notice that something was amiss with Trey. On Good Friday the following year, she found him behaving unusually and began to worry. “He was miserable! Something was off, and we couldn’t put our finger on it,” she remarked. After a midnight trip to the emergency room revealed a concerning blood sugar level of 25 once again, doctors first suspected meningitis. However, abnormal lab results eventually led to the possibility of GSD being diagnosed.
Genetic testing confirmed that not only did Trey have glycogen storage disease, but both of his parents were carriers of this rare metabolic disorder. The confirmation of the diagnosis prompted significant lifestyle changes for the McGowan family. Trey required a meticulously structured feeding schedule, which compelled his mother to feed him raw cornstarch every few hours in an attempt to maintain his blood sugar levels. “The younger years were more intense,” McGowan explained, highlighting the constant vigilance required to manage Trey’s condition.
As Trey navigated his health challenges, McGowan recognised his resilience. “Trey has had his highs and lows navigating this diagnosis,” she reported. Upon relocating to Ohio, the family connected with Cleveland Clinic Children’s, where Trey began to work with a dedicated medical team, providing both support and specialised care.
Throughout Trey’s journey, the McGowan family experienced many difficulties, including numerous hospital visits and uncertainties regarding his health. Despite these challenges, McGowan recalled that there were also moments of joy, attributable to the expert care her son received. “We adjusted quickly to the changes,” she said, expressing her determination to ensure her son not only survived but thrived.
Recently, the family was informed about a promising gene therapy called Genglycos, which aims to deliver a functional copy of a specific gene to the liver. This treatment seeks to restore enzyme activity and improve blood sugar control for those afflicted with GSD. For the McGowan family, the results have proven to be transformative. “Any improvement for an incurable disease is a blessing,” McGowan stated. Following the therapy, Trey experienced significant improvements in his condition.
At 13 years old, Trey has drastically reduced the amount of raw cornstarch he must consume daily, down from seven servings to about 1,000 calories worth. This change has allowed him to enjoy a more liberated lifestyle. For McGowan, the opportunity for her son to live with less concern about his illness is a dream come true. She hopes that as he matures into adulthood, he can achieve greater independence without the burden of constant health management.
“My hope is as he gets older and shifts to becoming completely independent that he doesn’t have to worry too much,” she affirmed, adding, “I want it to be manageable for him, and he doesn’t always feel like everything revolves around the disease.”
As they look towards the future, both Trey and McGowan remain optimistic about the ongoing advancements in treatment options and the potential for an even brighter tomorrow.