A “Rare Sisters” Fun Run
By Patte Smith; photos courtesy of the Gormley and Fries families
A small group of Surrey Ridge friends joined together for a Rare Sisters Fun Run and barbecue on May 31. The hosts, Jeanne and John Gormley, raised their incredibly close-knit and devout family in the neighborhood where they have lived for 42 years.
In January 2018, two of the Gormley’s great-grandchildren, Cecilia and Lilly Fries, were diagnosed with Batten disease, a rare neurodegenerative disorder. There are no treatments, no cures, and very little research for the fatal disease.
Many family members and friends joined Cecilia, Lilly, Nora, Ruth, Zelie and parents, Beth and Jon Fries, for the Rare Sisters Fun Run in Westminster. The entire Gormley clan, 40 of them, is steadfast in supporting Cecilia and Lilly and their family.
Rare Sisters Fun Run proceeds will help raise funds for the Fries family to purchase a special van to accommodate both of the girls who will need wheelchairs.
For more information about Batten disease and the story of the Fries family, visit https://beyondbatten.org/rare-sisters/.