Pearl Jam frontman Eddie Vedder‘s wife Jill discussed their six-year old friend Eli Meyer suffering from epidermolysis bullosa. Jill Vedder has a longtime friend whose son suffers from EB as well, WE.org reports.
“I’m just a regular kid,” says Eli, who was adopted from China at four years old, “but I have epidermolysis bullosa.”
“Eli is a superhero to me,” gushes big sister Lily. “It makes me sad when people stare or point at him.”
Lily started a social media campaign called “Come say hi,” to promote acceptance of EB and people who are different, catching the eye of the WE organization, leading to Eli and his family going onstage at WE Day California.
Eli couldn’t open his eyes at the event because of a corneal abrasion, but he still was around celebrities like Natalie Portman, Selena Gomez and Chance the Rapper in front of 16,000 people who greeted him with a friendly hello.
Eddie Vedder revealed ‘intense pain’ after sad news in a new video. Eddie and Jill Vedder are co-founders of EB Research Partnership (EBRP). Eddie surprised the Meyers on stage with a personal video telling them how moved he was by their story, before thanking them for their work on spreading awareness around EB. Jill, who helped walk Eli down the blue carpet (WE’s take on the red carpet) before the show, beamed with pride as she watched the young man under the spotlight.
“Eli is such a sweetheart. Lily is exactly right—instead of staring and making these kids feel uncomfortable, go up and say hi, make them feel like a friend,” says Jill. “They’re a cool duo, those two.”
She also said, “EB is brutal. It’s so unbelievably painful and horrific to watch what these kids are going through,” says Jill, who acts as vice chairman of EBRP. “But we believe—the researchers believe—that we can cure it.”
Jill later concluded, “Cure EB, cure them all.” An Eddie Vedder fan recently told a brutal injury story with a photo.