Joe Surf: Surf 4 Katie benefits young woman battling rare disease

It's the time of year when plenty of surfing competitions are taking place up and down the Southern California coast, but one event Saturday warrants special attention.

The Surf 4 Katie contest on the south side of the Huntington Beach Pier is a benefit to help former Huntington Beach High School surfer Katie Berry and her family with medical care and costs.

Berry was not unlike many Orange County kids, growing up near the beach and taking advantage of the opportunity to surf. She surfed for Andy Verdone's Huntington Beach High team and moved on to college, like many of Verdone's surfers do.

While attending San Francisco State University, Berry was experiencing symptoms such as nausea and fatigue, but trips to a doctor didn't result in answers. Eventually, her body shut down and she nearly died.

A series of tests revealed she had Addison's disease, which only about one in 100,000 people in the United States has, according to the National Organization for Rare Disorders.

With Addison's disease, the adrenal glands fail to produce enough of the hormones cortisol and aldosterone. When the body is under stress, such as with an injury or infection, the cortisol deficiency can result in a life-threatening crisis. Treatment involves taking hormones to replace those not produced by the adrenal glands.

Berry returned home and was going to school at Saddleback College when she suffered a heart attack the morning of Jan. 4, 2016.

"She had no pulse," said her mom, Brenda. "They didn't even do chest compressions on the way to the hospital. She was DOA.

"She was in a coma for a month and a vegetative state for six weeks after that. She was relocated where she was gradually taught to lift her head. Sitting up was a big ordeal. Moving hands, arms and legs came after months and months of painful trying."

It's been more than a year since the heart attack, and Katie is fighting and improving daily, according to her mother.

"To see her now to where she's sitting up and eating dinner at the dinner table every day … we wish she could talk, but she's making improvements and it's pretty miraculous," she said.

Katie recently had surgery to close the tracheotomy opening that she had in her throat for 11 months.

"They are hoping that will help her produce more sound up through the vocal cords, which they discovered were not damaged, and there's no scar tissue buildup in the passageway at all, or in the vocal cords, so it's all good news," Brenda said.

"We don't know how deep the anoxic injury [oxygen deprivation] to the brain was in the speech command center, known as the Broca [area]. It's unknown; it's going to take time and a lot of speech therapy.

"Pretty much it's like teaching a baby or toddler how to speak, how to enunciate and form words. But for her she'll also be learning how to push that sound up through the diaphragm. If she does learn to talk again, it will be one of the first cases that we've known of for someone to be with no pulse that long to relearn to talk."

So as Katie fights to get better, her family and friends are doing everything they can to afford it. That's where Mary Vasquez got involved.

Vasquez is a senior at Edison High School, and her older sister Catherine is good friends with Katie. Vasquez decided her senior project would be to organize a benefit surf contest.

"Katie surfed with the Huntington Beach High School surf team, and Catherine surfed for Edison High," Brenda said. "Known competitors, right? And Coach Verdone, he would literally draw a line in the sand and say, 'Don't look that way, don't cross the line in the sand.'

"Well, Katie and Catherine couldn't care less. They would go running down the beach — 'Katie!' 'Catherine!' — and just hug each other, and Coach Verdone would roll his eyes. But in the end they would still compete. And when it was over they'd go out for tacos. Whenever one of them needed anything, they were always there for each other."

A few years ago, Catherine helped organize a surf contest for a friend with amyotrophic lateral sclerosis, or ALS. So Vasquez followed her sister's lead and decided to do the same for Katie.

"She was in 24-hour care all the time; physical therapy and all those bills kept adding up," Vasquez said. "And because Addison's disease is such a rare disease, the insurance didn't cover any of that. So it made me want to help out Katie and her family a lot more."

It is particularly helpful for the Berry family, because Brenda is fighting a battle of her own.

"At first we thought, 'No, no, we're fine,'" Brenda said of Vasquez's intention to have a surf contest. "They let it go for a month and asked again. By then I was diagnosed with Stage 4 colorectal cancer and it had spread invasively, and so we were in need of a lot of 24-hour help with Katie because I couldn't do it all the time, I was sick."

While most of the money raised at the contest will go to helping with Katie's medical care and costs, Brenda said a portion will go to adaptive sports programs. And the family is looking to assist others afflicted with Addison's, particularly to help emergency response teams become more aware of the symptoms and what to do when they are recognized.

"It's hard for people to diagnose it because it's not on their minds," Brenda said. "It's not something they would typically think of. We're hoping to spread the word with an Addison's support group. We're very active with making legislative changes in various states in getting the disease more recognized with emergency protocol treatment.

"It's an autoimmune condition, but it's rare. President Kennedy had it, and it was very well-hidden from the public because it is such a life-threatening disease."

After the surf contest, Mama's on 39 will host a party, with 20% of all food and beverage sales going to Katie.

But the highlight of the day will be Katie herself, who is expected to get in the water with the help of Mighty Under Dogs, a charity group that sponsors and participates in surfing events benefiting various causes, such as autism, other cognitive disorders and social challenges.

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IF YOU GO

What: Surf 4 Katie surf contest

When: 7 a.m. to 5 p.m. Saturday

Where: Huntington Beach Pier, 437 Pacific Coast Hwy.

Cost: $45 for first division entered, $30 for each additional division ($5 more the day of the event)

Registration, information and donations: surf4katie.org, (714) 420-8033

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JOE HAAKENSON is a Huntington Beach-based sports writer and editor. He may be reached at joe@juvecreative.com.

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