Thanks to OC Register for this story.
Katie Berry slowly stretched out her pinky and thumb, her three fingers in the middle still folded over her palm, and threw up a “shaka.”
In the surf world, it’s a gesture that means “hang loose,” a quick, casual sign of happiness, stoke, joy.
But for Berry, 25, a once avid surfer and part of the Huntington Beach surf team who now sits in a wheelchair, barely able to move, the small hand movement means more.
It means hope.
A rare diagnosis
Growing up, Berry’s skin was unusually tan.
No one thought much of it, since the bubbly, sun-kissed strawberry blonde spent four years on the Huntington Beach High School surf team, paddling out each day before heading to class.
One morning, she collapsed face down in the sand during practice. Was she not getting enough to eat? her coach Andy Verdone asked.
“She eats like a truck driver,” her mom, Brenda Berry, told the coach.
The dark skin, fainting and the constant fatigue were clues to what was happening inside her body, but doctor after doctor couldn’t figure out exactly what was wrong.
After high school, she moved north to study at San Francisco State University. Despite not surfing every day, her skin remained a dark bronze color. She was nauseous all the time, and tired.
Are you drinking – could your liver be failing? her mother wondered.
“She would test negative for alcohol and drugs each time she went to the hospital, and was sent home with anti-nausea meds,” Brenda said.
Then one morning during her sophomore year, her parents got the call that they had to get to Northern California as soon as possible.
Their daughter wasn’t going to make it through the night, doctors said.
After a number of tests, Katie was diagnosed with Addison’s disease, a rare ailment that depletes hormones made in the adrenal glands, a loss of cortisol in the system that sucks out salt in the body and can cause chronic fatigue, loss of appetite, weak muscles that go into spasms and darkening of skin.
When what’s called a “total crisis” hits, the body shuts down.
Katie, 19 at the time, made it through the scare in San Francisco, and was given steroids and other medications to help balance her body’s deficiencies.
“It’s the difference between having an automatic and manual shift car, she would have to learn to manually shift her body,” Brenda said. “Anything that would trigger pain, she would have to up dose to mimic what our bodies would naturally do.”
The surfer who loved to spend winters hitting the snowy slopes wouldn’t let her sickness slow her down. She wanted to continue her education, getting a scholarship to Chapman University but needing to drop out because of her illness. She continued classes at Saddleback College, shifting her focus from event planning to becoming a neuro-ultrasound specialist.
But on Jan. 4, 2016, everything came crashing down.
“Do you need to go to the hospital?” Brenda asked the night of Jan. 3, when her daughter said she was again feeling ill.
She said she’d be fine and went to sleep.
At 6:30 the following morning, there was a loud crash.
“She had tried to stumble into her bathroom,” her mom recalled. “And she died.”
Katie’s heart stopped for about 35 minutes.
Road to recovery
The EMTs arrived quickly, but they didn’t know anything about Addison’s and didn’t have the high dose of cortisol needed to get her body going again.
So they loaded Katie into an ambulance and drove her to Hoag Memorial Hospital Presbyterian in Newport Beach. Their speed was slowed by morning rush-hour traffic and each minute diminished her chances of survival.
Even when doctors were able to revive her, she remained in a coma for more than a month.
“Friends and family were ready to let her go,” Brenda said.
But, after six weeks, Katie opened her eyes.
After four months, she could hold her head up on her own. Then, she could swallow normal food.
In recent months, she’s been able to walk a short distance with the help of someone beside her.
And a few weeks ago, she threw up her first “shaka” while visiting a friend, Rockin’ Fig Fignetti, at his surf shop off Main Street, a smile splashed across her face.
“I can see her improve, the more social interaction she has,” Brenda said. “She couldn’t use a utensil, and now all of a sudden, boom, there goes her hand. I cried.”
She still can’t talk, but smiles often. She has her long-term memories, but her mental state is still unknown.
“She’s in such a sweet, pleasant place right now,” Brenda said. “I saw brain injuries leaving people in a state of anger and outbursts and personality changes. I’m thankful Katie seems happy. She does love a challenge, always has. I think that part of her personality is still there, helping her every day.”
Surfing for a cause
Katie and her family are no strangers to stepping up during times of need.
When fellow Huntington Beach High School surfer Mike Fisher was diagnosed with brain cancer nearly 10 years ago, Katie and her mom started a fund-raiser called “Save Mike’s Head” to assist with his medical costs.
Katie was always quick to volunteer at events such as Life Rolls On, which helps get paralyzed surfers into the waves.
When Katie’s best friend, Catherine Vasquez, put on a charity surf contest to help people with ALS when they were in high school, Katie didn’t hesitate to help.
Now, others are stepping up to help her in her time of need.
Vasquez’ sister, Mary, had a school assignment for a business and international studies class and knew she wanted to add a specific purpose to her surf contest project: to help the once-vibrant surfer she looked up to as a kid get the help she needs.
“I decided I wanted all the proceeds from this contest to help her and her family,” the 17-year-old Edison High School student said. “She needs 24-hour care, and insurance doesn’t cover it.”
The care normally wouldn’t be an issue, but her mother is facing her own struggles, fighting her second bout with cancer – this time stage 4, spread throughout her body.
“Everything is unknown day-to-day. My goal was to take care of her,” Brenda said. “But now, she has a 66-year-old father and a mother with terminal cancer. Her future is scary. We’re hoping we can come up with a good solution to make sure she’s taken care of.”
When they first heard of the plans for the fundraiser surf contest, Katie’s parents were taken aback. And when they told their daughter about it, her eyes lit up.
“It just melted our hearts,” Brenda said.
Brenda knows seeing her daughter in such a frail state can be hard for her friends.
“Katie is normally witty, sharp, with a quick sense of humor,” she said. “For her to not be able to speak right now, it’s hard for 20-somethings to be around that. But her friends are handling it beautifully.”
Brenda is hoping to hear her daughter’s voice soon – and if she’s able to talk, it will be nothing short of a miracle, considering how long her heart stopped.
Her mom also wants to be a voice for her daughter and others with Addison’s. Emergency responders should be trained to treat the rare disease, she said, something she wants to fight for in the future.
But first, the goal is to get Katie to her happy place – the beach. They will be at the benefit surf contest March 4, with Katie in a wheelchair with big tires that can traverse the sand.
And one day soon, when the ocean is flat and looks more like a lake, they hope to get her on a surfboard to feel the cool water on her body.
Doctors have a theory: Salt depletion is what causes the bodies of people with Addison’s disease to shut down. It could be all those years surfing in salt water every day that kept Katie healthy enough to enjoy her life through her teen years.
“It’s a very interesting theory,” Brenda said. “Surfing may have kept her alive.”
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Thanks to OC Register for this story.