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Boy, 13, Diagnosed with Rare Genetic Disease Has to Consume Raw Cornstarch to Survive (Exclusive)
Yahoo • • health
Key Points:
- Jen McGowan's son Trey was diagnosed with glycogen storage disease (GSD), a rare metabolic disorder causing dangerously low blood sugar, after multiple emergency room visits in his infancy.
- Genetic testing revealed that both parents are carriers of GSD, which they passed on to Trey, leading to a challenging early childhood requiring strict feeding schedules with raw cornstarch every three hours.
- The family connected with Cleveland Clinic Children's for specialized care, and Trey later received a gene therapy called Genglycos that has significantly improved his blood sugar control and reduced his dependence on cornstarch.
- At 13, Trey now manages his condition better, consuming less cornstarch and experiencing fewer hypoglycemic episodes, allowing him more freedom and a better quality of life.
- McGowan hopes Trey will continue gaining independence with manageable care, aiming for a future where his disease does not dominate his life.
