The plastic, hot from the summer sun, bends at your feet and propels you into the sky, soaring so high you feel like you can touch the clouds. Without a doubt, jumping on a trampoline is one of the most blissful activities of childhood.
For six-year-old Eli Meyer, this joyous pastime comes with cuts, blisters and shorn skin.
The sweet-natured San Diegan was born with epidermolysis bullosa—EB for short—a group of genetic disorders that affect the skin. EB is caused by a gene mutation that leaves those who have the condition unable to produce the proteins that bind the skin’s two layers together. Without these vital proteins, the skin is incredibly fragile and can easily tear, blister and erode from even the most minor of abrasions. This means Eli spends hours each day cleaning wounds and changing bandages.
Roughly 500,000 people around the world live with EB; there is no known cure.
Eli, though, has hope—a trait he shares with WE, a movement led by young optimists like him. By encouraging youth to turn hope into action, WE empowers them to create positive change on causes close to their heart. Through WE, people are inspired to tackle daunting or seemingly impossible goals, like stifling homelessness, or shaping a more inclusive world for those with EB.
“I’m just a regular kid,” says Eli, “but I have epidermolysis bullosa.”
Eli was adopted from China when he was four years old. His family knew he had EB, but it didn’t matter; Eli was their son.
“Eli is a superhero to me,” gushes big sister Lily. “It makes me sad when people stare or point at him.”
Growing tired of the way strangers treated her little brother, Lily started a social media campaign called “Come say hi,” to educate people about EB while encouraging them to be more accepting of people’s differences.
It’s Lily’s campaign that first caught the attention of WE, landing the siblings, along with mom, Michelle, on stage at WE Day California.
That day, Eli couldn’t open his eyes because of a corneal abrasion, but he still got on stage—amongst celebrities like Natalie Portman, Selena Gomez and Chance the Rapper—to share his story and hear the 16,000 youth in the crowd shout out excitedly: “Hi, Eli!”
Instead of being singled out for his differences, the young change-makers in the WE Day audience embraced Eli. No one was asking his mother what was wrong with him or if he was contagious. The plucky Californian was the centre of attention and being celebrated on stage for his remarkable spirit and inspiring life journey.
This is where Pearl Jam’s Eddie Vedder comes in.
Eddie and his wife, Jill, are co-founders of EB Research Partnership (EBRP), the largest non-profit that funds research to treat and cure EB.
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.”
The Vedders have a personal connection to EB; Jill’s childhood friend has a son with the condition. As soon as the couple learned about the devastating disease, they knew they had to get involved and help find a cure.
“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.”
Since its inception in 2014, EBRP has raised $25 million in the quest for a cure (gene editing is a promising treatment). Jill estimates that there were only two clinical trials underway when they first launched; now there are upwards of 20.
According to EBRP, there are roughly 5,400 other incurable genetic diseases that could also benefit from the ground-breaking gene-therapy techniques being developed by the organization. Jill concludes, “Cure EB, cure them all.”
People with EB are often called “butterfly children” because their skin is as fragile as the wings of a butterfly. Just as a butterfly can still flutter with a damaged wing, Eli won’t let his wounds stop him from soaring, on a trampoline or in life.
Learn more about how you can get involved in finding a cure with EBRP and #ComeSayHi at ebresearch.org.
Zoe Demarco is a writer and production manager for WE Stories. A third generation journalist, she has a natural curiosity for other people’s lives.