Pro surfers help kids with cystic fibrosis experience the bliss and empowerment of riding a wave
By Andrew Dubbins
Riding tandem with pro surfer Hans Hagen, five-year-old Maddy gripped the board tightly as he paddled her into a wave. He popped onto his feet, sending the nose of the huge foam board lifting off the water and Maddy with it.
“There she goes!” yelled her mom, watching nervously from shore.
It was a crisp October morning at Malibu’s world famous Surfrider Beach. The fog had burned off, leaving only a salty mist over the water. About 20 kids and their parents, five pro surfers and an assortment of volunteers had gathered for Malibu’s annual Surf Experience Day, hosted by the Mauli Ola Foundation.
Mauli Ola — which means “breath of life” in Hawaiian — is a nonprofit that holds beach days across the country for kids with cystic fibrosis (CF), allowing them to ride the waves with the pros
and wallow in the saltwater. The salt is good for them, studies show, helping loosen the thick sticky mucus that builds in their lungs.
Just before Maddy’s wave crashed onto shore, Hagen expertly swiveled the board toward the sea — to protect Maddy from the whitewater — then leapt into the water. Smiling, he asked Maddy something, and she pattered her feet against the board.
“She’s scared,” said Maddy’s big sister, watching carefully from the beach.
“No, I think she’s excited,” her mom said.
We couldn’t hear what Maddy told Hagen but we could guess, because he started paddling back out for another wave.
Maddy, a fair-skinned towhead, was born with a major blockage in her stomach due to CF and lost 33% of her intestines in two major surgeries. She has to take enzymes with her food to maintain her weight, and gets especially red and sweaty in the sun. People with CF have a high level of salt in their sweat, and Maddy’s mom can taste it when she kisses her daughter.
Four years ago, the family moved from Austin, Texas, to Temecula for the salty sea breeze. “We’re about 30 miles from the water,” her mom told me. “That’s as close as we could get because it’s so expensive.” Maddy has been coming to Mauli Ola’s events since she was three, but this is her first time in Malibu. It’s a long drive, but her mom told me they couldn’t miss it. “Maddy was so excited,” she said.
I learned about Surf Experience Day three years ago when pro surfer Allen Sarlo — an original member of Venice’s world-famous Z-Boys surf and skateboarding team — hired my PR firm to publicize it. Big-hearted Sarlo, who runs a real estate office in Venice, paid our retainer out of his own pocket, half before and half after (money was a little tight, he told us).
I remembered the event fondly — watching pro surfers splash around in the waves with excited kids — so I decided to come this year as a spectator. This time I arrived an hour early and watched the setup. It reminded me of
a carnival, or one of those old beach party movies. Volunteers were setting
up two big tents on the soft sand as renowned Hawaiian singer Troy Fernandez strummed “Hotel California” on the ukulele.
Sarlo, nicknamed “The Keeper of Malibu,” was donning his wetsuit like a giddy schoolboy. A shy 59-year-old with a dark tan, he told me the waves looked perfect and he was stoked to paddle out. He pointed toward an old Hawaiian man on the sand with a little dog on his lap, both looking out to sea. “That’s Reno Abellira,” Sarlo said. “The legend.” (Abellira was a pioneer of the short board in the ’70s, famous for his speed on the towering waves of Waimea Bay). I asked if he works for the foundation. “Nah,” Sarlo said. “Just passing through.”
Hagen, executive director of Mauli Ola, briefed the volunteers over a megaphone. “Be mindful,” said Hagen,
a tall man with a blond beard speckled with gray. “On the beach, we have to keep separated so the kids don’t cross-contaminate. … If you happen to work with a second kid, make sure to sanitize your board.”
After his speech, Hagen pulled aside a couple shaggy-haired surfer boys who’d driven a dusty station wagon up from Venice to help out. “You guys can help block and get ’em some waves,” Hagen told them. This famous point break gets super crowded, Hagen explained to me later, so the Mauli Ola crew — while respecting the lineup — forms a little pack, like a buoy, to help the kids catch waves.
At around 10 a.m., parents began arriving with their kids, lathering their little faces with sunscreen and helping them wiggle into wetsuits. Parents of kids with CF have to be constantly “on duty,” monitoring their children’s diets, sun-exposure, fatigue and — at this event — their every interaction. People with CF are at high risk of spreading germs among others with the disease (known as cross-infection), so the kids have to keep at least six feet away from each other.
Moms and dads watched from the shore as their kids paddled out with the pros. The tide was low and one parent expressed concern about rocks. “This is a day off for the parents,” a volunteer told me. “But it also takes a lot of trust.”
I quickly decided their trust was well placed in the Mauli Ola pros. Far from the stereotype of spacy, laid-back surfers, these pros receive training from local hospitals and talk about cystic fibrosis with a level of knowledge you’d expect from MDs. They’ll cancel an event if the weather is bad or water quality is poor, and they monitor the kids with extreme diligence.
One of the pros, Howard “HK” Keliinoi, who runs a surf shop in Costa Mesa (he supplied all the boards and wetsuits) and works as head coach of Cal State Long Beach’s surf team (he skipped practice at Black’s Beach to be here), got paired with a five-year-old first-timer named Chloe. “I can’t shake your hand ’cause I just took a little girl out,” said Keliinoi, in that warm lilt of his native Hawaii. “So I’m going to sanitize and get cleaned up and get the board cleaned up and I’ll be happy to take you.” Frightened after her first ride, Chloe demanded to return to shore.
Keliinoi told me he tries to catch at least one good wave with the reluctant ones. “Water confidence is a big factor,” he said, explaining that the goal of these events is to get kids comfortable in the ocean so they’ll come back on their own. “You cannot wipe out with them — ever,” he told me. “It’ll wreck their confidence.” With a smile, he added: “Fortunately we’re all pro surfers.”
Cystic fibrosis is a genetic disease that creates a buildup of mucus in the lungs, pancreas and other organs. It can cause difficulty breathing, lung infections, and intestinal problems. In the 1950s, a child with CF rarely lived past elementary school; now, because of advancements in treatments and care, the median predicted survival age is close to 40.
The Mauli Ola Foundation was started by the founders of Ambry Genetics, brothers James and Charlie Dunlop. In 2007 they read an Australian study in which CF patients reported that their lungs felt clearer after surfing and breathing in the ocean’s salty spray. (Interestingly, hospital treatments for CF involve inhaling saline mist through a mask and wearing a vibration vest — mirroring the salty mist and rolling motion of the ocean.) The brothers, both avid surfers, started inviting pros to Newport Beach to teach surfing to CF patients. Word spread, and some of the biggest names in surfing got involved. There have been 250 Surf Experience Days since, and today the foundation has 2,500 participants across chapters nationwide.
As Maddy cruises by with Hagen on another wave (she’s getting all the good ones), newbie Chloe’s mom chats with another mom, whose son Levi has been surfing for six years and now rides solo. They talk mostly about surfing. Most of the new parents know very little about the sport and couldn’t pick these pros out of a lineup. The veteran parents, like Levi’s mom, take them under their wing, welcoming them into the Mauli Ola family. Just as the kids have to develop “water confidence,” I realize, so too must these parents.
I watch Levi, a lanky blond on an orange board. He’s a great surfer, maneuvering up and down the swells with poise and grace. “These kids are being taught by the best surfers in the world,” Keliinoi reminds me. They might get a lesson in splayed-kneed Hawaiian style at one event, then in chest-charging Australian style at the next. Levi learned from pro surfer Mark Gabriel. The two developed a friendship over the years, and they still surf together on a regular basis.
“What charges us up,” said Keliinoi, “is we get to watch these kids’ development.” But there’s also the camaraderie between the pros. “We all share the same stoke for surfing,” he said. Trying to articulate what these events mean to him, Keliinoi gets tongue-tied: “Hard to find a word,” he told me.
For the parents, Surf Experience Days offer not only a short vacation from their responsibilities and a chance to mingle with fellow parents of kids with CF, but a reminder of pure childlike fun, which can get buried under the weight of constant vigilance and worry. I spoke with one dad, a guarded and taciturn man, who sat alone on the sand. He told me his 11-year-old daughter Hayden drags him to every Mauli Ola event within driving distance. I asked if he’s a surfer. “I used to be,” he said, looking out at the water. “Maybe she’ll bring me back into it.”
For the kids — just as every strain of CF is different, as is every wave on the ocean and every style of surfing — I suspect this sport means something different to each of them. For some it’s a welcome dose of danger, much lacking in their highly monitored daily routine. For others, surfing offers a feeling of normalcy. One mom told me her son often feels alone in his sickness, but in Southern California, where surfing is “the thing,” it makes him feel just like everyone else.
After her seventh or eighth wave, with Hagen panting from all the paddling, Maddy finally decided she was ready to come in. Her mom ran to the shallows to wrap her in a towel and a hug. Maddy was pruny and dripping wet, and she had on a big smile.
I thought about Keliinoi, struggling to pinpoint the meaning of this event; and Hayden’s dad, falling back in love with surfing; and The Keeper of Malibu, who’s been riding waves for half a century and still feels the stoke for this simple yet elegant pastime. What is it about surfing?
Maddy whispered something to Hagen, her new teacher and friend.
“She said it’s like a magic carpet ride,” he told us.