My name is Pat Gibilisco, and my husband and I have two daughters. Lauren is 32 years old with Wolfram syndrome (WS) and our other daughter Megan is 30 years old and a carrier of WS. We live in Nebraska. Lauren was diagnosed 20 years ago at age 12 with WS. At that time there were no foundations representing this disease nor was there any research taking place, I referred to that time period as “The Dark Ages”. Rob Birkinshaw, another parent who had children with WS and I decided to start the very first WS Family Support Group in 1990. In the beginning, it was just four families; two in the United States, two in England and one in Australia. Our WS support group has since grown over the years to more than 160 families.
Wolfram syndrome is a deadly and multifaceted disease. WS presents many manifestations, and unfortunately, my daughter, Lauren, suffers from most of them; diabetes mellitus, diabetes insipidus, extreme hearing loss, optic atrophy, choking issues, seizures, total loss of taste and smell, ataxia, heat intolerance, short term memory loss and problems with her bladder and bowels. Our family has seen an army of specialists trying to treat all these symptoms. Throughout all of Lauren’s struggles, the most amazing thing is I have never heard one complaint out of her mouth. She just takes on every new issue with determination. This is a common factor with all Wolfram children. They are very bright, kind, and considerate, they are warriors.
