Over 400 people from throughout our community came together at NSU’s campus to support Lydia Rachal Saturday November 22 at the Fun Run for Lydia fundraiser. The event was family fun for all ages. In addition to the 1 mile and 5K runs, there were inflatable castles and face painting for the younger set. Cheerleaders from St. Mary’s were joined by NCHS Chiefettes and Maroon Line members in cheering on the runners and throwing up clouds of colorful powder for the runners to pass through. DJ Wrinkle Free Entertainment kept up a lively flow up music to keep spirits high while Morrison Farms served up delicious burgers for the runners and their families.

The race shirts featured a chicken in running shoes. This logo reflects Lydia’s affection for animals, especially her chickens and captures the event’s spirit of lighthearted family fun.

People from all over our area and indeed the entire country as word spreads have rallied to the side of Lydia, a local three-year-old girl diagnosed with San Filippo Syndrome, a rare genetic disorder that attacks the central nervous system and is terminal. There is presently no cure, but Lydia’s parents were able to report some wonderful news as well as a challenge they and 14 other families with children affected by San Filippo Syndrome are facing. There is a clinical trial open for Lydia and the 14 other children. In order for the trial to proceed, the families need to raise 3.8 million dollars by December 1st. If they successful, the trial can proceed, and the pharmaceutical company will make enough of the treatments for all 15 children under the FDA’s “Compassionate Care” provisions. The families have thus far raised over 3 million dollars, leaving $800,000.00 to go. It may be an uphill battle, but they are undeterred.