Concerned the developmental decline could be signs of a neurological disorder, the family’s pediatrician flagged the issue to Dylan’s parents, Michelle Tang and Ron Sonnenberg. Dylan was admitted to Cedars-Sinai Guerin Children’s, under the care of pediatric neurologist Jeffrey Swarz, MD, and pediatric endocrinologist Bahareh Schweiger, DO, MPH.

A battery of tests revealed two critical diagnoses: Dylan was severely hypoglycemic, and she was experiencing infantile spasms, a form of infantile epilepsy classified as a neurological emergency.

“The brain requires sufficient glucose to function, and hypoglycemia frequently leads to strokes in infants like Dylan,” said Swarz. “It was later determined that she had the ABCC8 mutation, causing congenital hyperinsulinism. The infantile spasms were likely related, but we can’t say for sure.”

Dylan is one of more than 350,000 children and adolescents affected by insulin-related illnesses, including diabetes, in the U.S. November marks National Insulin Awareness Month and World Diabetes Day.

The news from the doctors terrified Tang and Sonnenberg. “We were not very optimistic at that point,” Sonnenberg said. “We were devastated when we first learned her diagnosis.”

Hyperinsulinism occurs when the pancreas produces too much insulin, resulting in potentially life-threatening, low blood sugar levels. The condition can also signal health challenges that extend into adulthood, due to the risk of brain damage from recurrent hypoglycemia.

“If not managed adequately, there can be long-term challenges, including ongoing developmental delays and learning deficiencies,” Schweiger said. “With proper medical intervention, many children achieve reasonable metabolic control and normal functionality.”

Early on in Dylan’s treatment, she had to endure steroid injections, twice a day, to manage her symptoms. “She was in and out of the hospital,” said Tang. “We spent New Year’s Eve in the hospital that first year, because Dylan had to be monitored for adverse reactions to the steroids. But it was a small price to pay for us, as parents.”

Today, Dylan’s glucose levels are carefully managed via her gastrostomy tube feedings. Overnight, continuous feeds help maintain glucose stability. Schweiger said Dylan will still require lifelong multidisciplinary care, due to her medical history, but added, “Her prognosis is great, and her hyperinsulinism is showing signs of becoming less severe, with no recent spasms to report.”

Now, two years after Dylan’s diagnosis, the Tang-Sonnenberg family is celebrating new milestones.

“Dylan’s motor skills are improving—she’s walking with help and pulling herself up,” Tang said. “She’s very social with other children and is showing progress with speech and language skills.”

The family says it has Cedars-Sinai to thank for it all, including a new sense of hope for the future. “We are eternally grateful,” Sonnenberg said.

Read more in Cedars-Sinai Discoveries: Innovation and Collaboration in Pediatrics at Cedars-Sinai Guerin Children’s