Rare Diseases

UNO hockey welcomes newest teammate: 13-year-old with rare disease

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Isaac Barchus, 13, signs the papers to be an official Mavericks hockey team member on Thursday October 5, 2017 in Omaha. Teammate Ryan Galt and Coach Mike Gabinet look on. Barchus is one of about 20 people in the world with CANDLE Syndrome, an autoinflammatory disease.

The newest and youngest member of the University of Nebraska at Omaha hockey team is Westside Middle School student Isaac Barchus, who was signed Thursday.

The signing event was organized by Team IMPACT, a group that aims to improve the quality of life for children facing serious and chronic illnesses.

Isaac has a very rare autoinflamatory disease called CANDLE Syndrome, or Chronic Atypical Neutrophilic Dermatosis with Lipodystrophy and Elevated Temperature.

His passion is…