This month, the Holler family will be headed to the Tribeca Film Festival—which would normally be pretty heady stuff for a family with young kids. But for the Hollers, it’s only the most recent remarkable event in a few years that have been full of them.
They’ve been hanging out with rock stars. Getting flown to concerts. Being filmed for a documentary. It’s all been pretty exciting, Jason Holler admits. But it’s also part of something bigger than the family: The need to find a cure for the terrible, extremely rare disease from which Rowan Holler, 10, suffers.
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A native of small-town Illinois, Holler attended Southern Illinois University– Edwardsville, where he met a bunch of fellow musicians and formed what would become one of the seminal St. Louis bands of the early aughts, Kentucky Knife Fight. But in 2014, when Holler and his wife, Kate, were pregnant with their first child, they left St. Louis—and the band—to be closer to her family in Texas.
It was there that Rowan was born and, within a few days, her doting parents discovered blisters on her body. Those seemingly small blemishes set off tests that led to a dreadful understanding: Rowan had a disease called Epidermolysis Bullosa, or E.B. for short, a rare genetic disorder that causes fragile skin that blisters easily. People afflicted with it are sometimes called “Butterfly Children” for their paper-thin skin.
For Rowan, E.B. has meant a difficult regimen of full-body bandages to protect her skin (infection is always a threat). At times, she’s even had to use a feeding tube, as even the skin inside her mouth is extremely delicate. More severe forms of the disease have a life expectancy of around 30.
Rowan’s childhood has been far from easy, but at 10, she’s doing well. Her dad describes her as a precocious kid with a huge vocabulary, but she still needs a one-on-one aide at school due to the dexterity issues that come with E.B. She’s also on pain medication. Says Holler, “Her baseline is just kind of pain. The kind of medications that she’s taking and the dosages of the medications she’s taking, if you or I were to take it, like, we would be at home in sweatpants.” Not Rowan: “She has good days and bad days, but most days, except for the bandages, you would never know that she’s in pain.”
Even so, the middle grade years can be hard. “Now that she’s 10 years old, we’re dealing with more emotional stuff, psychological stuff,” Holler says. “She’s becoming more aware of her differences from other kids.” Often, that’s a very difficult thing. But then, in the last few years, there have also been some good differences—namely, the support given to E.B. awareness and research by Eddie Vedder, the lead singer of Pearl Jam.
Or, as Holler calls him, “Ed.” As he admits, “It’s one of the more surreal contacts in my phone.”
Inspired by the son of a childhood friend who suffers from E.B., Vedder and his wife, Jill, have used their star power to advocate for people with the disease. Ten years ago, the couple founded the E.B. Research Partnership to raise money and awareness. More recently, Vedder hosted a series of solo concerts in Seattle in October of 2023 as a fundraiser. The Hollers were among the families flown to Seattle to participate—footage that is now captured in the documentary Matter of Time, which will debut at the Tribeca Film Festival on June 12. Rowan, her dad says, is heavily featured in the film.
Vedder’s sponsorship of the cause has contributed to positive research developments for E.B. The partnership gives away millions for research each year, funding 160 different projects throughout the past decade (a total of $70 million). In April, the Federal Drug Administration approved for the first time a cell-based gene therapy for the disease.
For Rowan, there have also been more personal triumphs—including the opportunity to meet Jellyroll and Post Malone at an intimate concert in Nashville raising money for A.B. “Rowan wants to educate people on what she has and help just as much as we do,” says Holler, adding, “As her father, I feel like I’m a pretty good dad, and I can do a lot of things for her, and to introduce her to Post Malone is now one of those.” Malone even makes a cameo in an Instagram video that captures Vedder giving Rowan a ukulele. It’s earned more than 12,000 likes–a big boost to Holler’s efforts to raise awareness about E.B.
The Hollers are now living in Colorado, and Rowan now has two younger siblings (the couple used IVF to make sure they had none of the genetic abnormalities that cause E.B.). For Jason Holler, it’s a life that’s filled with both the steady thrum of day-to-day parenting and sudden celebrity interactions. “I’m sending emails to her teacher, like, ‘You’ll have to forgive her, she’s not going to be at school the next two days to spend your time with Post Malone,” he says with a laugh.
Next month, that note will be about going to New York to see Matter of Time at the film festival—a film Holler hopes will bring even more attention to the cause. “Our hope is that at the end of this, it ends up on a streaming platform where everybody can check it out and know about this disorder,” he says. “And hopefully, it raises more awareness, and it gets more people to get interested in how to help out.”
