Congenital Hi Kids.org

Congenital hyperinsulinism (excessive insulin production) is the most common cause of persistent or recurring hypoglycemia (low blood sugar) in infancy. Many infants and children affected with any of the various forms of hyperinsulinism have recurring, severe episodes of hypoglycemia both before and after diagnosis that can cause seizures, brain damage, and developmental delay. Since undiagnosed hyperinsulinism or failure of treatment for hyperinsulinism significantly increases the risk of mental retardation and permanent brain damage, prompt diagnosis and aggressive treatment are crucial in the fight against this disease.

Because hyperinsulinism is a rare condition, only occurring in approximately 1/25,000 to 1/50,000 births, few facilities have the equipment and specialists necessary to diagnose and offer the best treatment for this disease. Currently, the Congenital Hyperinsulinism Center at Children’s Hospital of Philadelphia is the only center in the United States that performs the PET scan test in infants and children to help identify focal or diffuse hyperinsulinism.

If a child requires surgery for hyperinsulinism, parents can expect to stay at the hospital for at least one month. Children with hyperinsulinism require extra care at home in the form of blood sugar monitoring, maintaining regular feeding schedule, administering medications and glucagons. These prolonged hospitalizations and intense medical regimens can be stressful for the parents and families of children with hyperinsulinism.

A patient named Ty inspired Congenital HI Kids. Ty, like other infants born with congenital hyperinsulinism, was born into the fight of his life. He and his family face many challenges in his fight. Congenital HI Kids was formed to help Ty and other children like him in their fight against this disease. ”