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Congenital Hyperinsulinism - A rare disease, hope for a cure!
Posted on November 16 2014
My daughter, Alyssa, was diagnosed with a rare disease called Congenital Hyperinsulinism when she was 10 months old after suffering a seizure due to low blood sugar (her blood sugar was 13). When she was born her blood sugar was 5, but the doctors thought it was due to my gestational diabetes and she was sent home when she was 5 days old. Alyssa lived the first 10 months of her life with low blood sugar due to the lack of knowledge physicians have of Congenital Hyperinsulinism. Severe, prolonged low blood sugar (hypoglycemia) can cause brain damage, seizures and even death. Alyssa is now 8 years old. Since she was diagnosed, she takes a medication everyday to help suppress her insulin. I also check her blood sugar everyday, sometimes 5 times a day or more, especially when she is sick. She goes to The Childrens Hospital of Philadelphia every 6 months and has to stay inpatient once a year. She is so afraid of needles but lately she has been telling me she will be brave. I would like to help raise money for Congenital Hyperinsulinism for research, better treatment options and a cure so no other children have to suffer. I would also like to help raise awareness about this rare disease so it can be caught and treated in the first day of life.