Fundraiser Highlights Rare Genetic Disorder Coverage Gaps in Pewaukee

A Pewaukee restaurant hosted a fundraiser to support a family whose 13-year-old son suffers from an extremely rare genetic disorder, affecting fewer than 40 people worldwide. The child, born blind, deaf, and medically fragile, requires constant care and specialized medical equipment, many of which are not covered by health insurance. The event raised funds to cover costs such as handicap vehicles and other essential equipment, highlighting gaps in insurance coverage for rare medical conditions and the associated financial burdens on families. The family plans to organize additional fundraisers to assist others facing similar challenges with uncovered medical expenses.