Chicago Teen Dies of Rare Genetic Condition on Homecoming Night
Brennen Saele, 17, succumbed to complications from Vascular Ehlers-Danlos Syndrome after complaining of collarbone pain.
A Chicago high school senior, 17-year-old Brennen Saele, died unexpectedly on September 19 from complications related to Vascular Ehlers-Danlos syndrome (vEDS), a severe genetic disorder affecting connective tissues. His death occurred on the evening of his homecoming dance, just after he had reported experiencing collarbone pain.
Saele was admitted to Northwestern Memorial Hospital in Chicago due to the pain, where he ultimately died from a ruptured aneurysm. His diagnosis with vEDS came at age 15, though he had lived with the condition, which makes the body's tissues fragile, for his entire life. Previously, Saele had undergone three surgeries to repair a dislocated shoulder due to the fragility of his tissues.
Vascular Ehlers-Danlos syndrome affects an estimated one in 100,000 to 200,000 people worldwide, according to the Ehlers-Danlos Society. The broader Ehlers-Danlos syndrome is estimated to affect one in every 3,100 to 5,000 individuals.
His mother, Genesis Saele, also has vEDS and shared that she was tested first, leading to Brennen's diagnosis. She expressed a desire for his story to raise awareness of the disease, stating, "If sharing his story can help one person learn about this devastating disease, then his life continues to make a difference."
Following Saele's death, the community rallied to support his family. A meal train organized for the family raised over $42,775 from 472 donors. The family also received donations for an Eco-Friendly Memorial Tree Program in his honor.
A memorial mass was held on September 27 in New Lenox, Illinois. The family requested donations to The Marfan Foundation in lieu of flowers, citing the foundation's support for individuals and families affected by genetic conditions like vEDS.
Saele had been in a relationship with Anika Gaydos for over four years. In an Instagram tribute, Gaydos wrote about his excitement for homecoming and the loss she experienced.