Kona’s nurse, Jenny Decker, is only 38, but her biological clock is ticking, and one day her rare genetic disease will rob her of her ability to live an adventurous life. It’s getting closer.
Decker’s hands don’t listen to his brain very well, making it difficult to do simple things like button up his pants or open a bag of potato chips. The more I concentrate, the more my hands shake. She can’t hear her feet well either, which often affects her balance. And it’s getting worse and worse.
But Decker adapts. she always has Living with Charcot-Marie-Tooth (CMT) — an untreatable neurological disorder that affects an estimated 126,000 people in the United States and her 2.6 million worldwide — is all she knows.
Before it’s too late, Decker wants to complete the biggest item on her to-do list: circumnavigate the globe on a yacht.
And while she plans to do it solo, there’s first mate Romeo, her six-pound Maltese Yorkie. Romeo is a good companion, she said, but he doesn’t help “hunt Maine down.”
This is an epic journey spanning seven years.
Those in the Kona area can hear it all on Willy’s Hot Chicken on Friday, January 13th. Deckers owner and her best friend Alan Wilson is doing a “fundraiser” for her. From 6pm she runs until 9pm and features The Tremors.
Decker talks about her dream adventure while on set.
“I have to say that she is one of the nicest women I have ever met,” Wilson said. The fact that you want to do this to make it happen makes it special.”
Life has always been a challenge for Decker. She didn’t walk until she was four years old. Some doctors thought she might never walk, but her life changed after she underwent free surgery on her leg at Shriners Hospital in St. Louis, Missouri.
She joked that she has “Forrest Gump braces.”
However, although she was always more clumsy than other children, she learned to walk without aids. Tripping and falling was also part of her daily routine. She failed the physical exam to play school sports.
Decker said she was constantly misdiagnosed until she was 19 when her mother discovered her medical problems were caused by CMT. She and her mother both had high arches, a classic sign of the disease, and Decker said she knew she had CMT, too.
She tried her best to live her life, including earning a degree in nursing. But as her mother’s illness progressed, so did her desire to cram into the adventure of a lifetime before her ever-closed window of opportunity was completely closed.
“We literally made a video in 2017 that by 2020, we will own a yacht and start sailing around the world,” Decker said. “As I walked the waters of Kona Harbor, I promised myself that the only problem was that I had never lived on a boat or rowed offshore.”
A year ago, she kayaked around the Big Island alone. It was no small feat, and one that had never been documented before. She paddled her more than 300 miles clockwise in her 20 days. That included a day with 10-12 foot swells and she had winds of 20-25 knots making things so bad that a small vessel advisory was needed. She was afraid that she would be pushed out to sea and that she would never be seen again.
The trip required swimming in the dark before dawn, sometimes half a mile offshore. There we anchored our kayaks safely overnight as we were unable to paddle to the shoreline due to shore breaks. The LED lights on her kayak made it easier to see, so she swam in the dark.
But life on a live boat is completely different. So to try it out, she traveled to Alaska to live and work on a commercial fishing vessel. You know
Working on a boat from Kodiak, she worked 16-18 hour days, no TV, no Wi-Fi, no running water, no head, mostly wet and exhausted all the time. [bathroom]Life on F/V Matilda Bay was harsh and demanding.
After 100 days of fishing, Decker realized: …I didn’t like it all the time, but there’s some great footage of him using buckets. [to do her business] Behind the deck while the orca whales are approaching.
She loved it so much that she returned to Alaska for a second commercial fishing stint, but this time the F/V Eileen was much nicer and had a bathroom. She also returned because the money was extraordinary. It helped her pay off all her debts.
Decker returned to the Big Island as a visiting nurse at Kona Community Hospital and was eventually signed on staff. In Kona, he joined a sailing club, sailed with friends who owned boats, and learned everything he could about the life on board.
At the beginning of 2020, she was ready to start her round-the-world dream.
She sold everything she owned in Hawaii, bought a van on the mainland, and began looking for the perfect yacht in Florida. She and her partner chose a vessel called “Made of the Sea” to set sail from Lake Worth to the Bahamas on March 12, 2020, thinking it would be an epic journey. It lasted one country.
“We checked the Bahamas before the whole world shut down,” she said.
They spent three and a half weeks on a deserted island with no contact with the outside world. When they appeared on Green Turtle Cay in Abacos, Bahamian officials wanted to know where they came from.
Then they were told, “You can’t move the ship.” The COVID-19 pandemic was in its early, frightening, unknown stages.
For two and a half months they were stranded at sea, but fortunately had food for about three months. I went back to
They stored the boat and she returned to St. Louis, where she grew up, on a critical COVID-19 nursing mission.
Working 12-hour night shifts five times a week on your feet and the mentally draining work of dealing with dying COVID patients can be tough on anyone, especially Decker, who has neurological issues. It’s a big deal for She suffered a lot, but it was a lucrative business and she needed money for her dreams.
In 2021, when she was ready to begin her big journey again, her partner became her ex. Told.
The split was devastating. Decker thought long and hard about selling the boat and scrapping the whole idea.
“I didn’t know if I could do solo sailing,” she said. “I didn’t think I knew enough. I argued for a long time and called her friend Dustin.”
That friend, Dustin Reynolds, was nearing the end of a solo round-the-world yacht trip. he said to her I have one arm and one leg, but you already have a lot of experience. You can do it.
Decker bought the original part of the boat, stopped being grumpy, and started traveling solo again. It started well and with every 100 miles her confidence grew.
However, the trip was cut short when a faulty chain plate caused the boat’s mast to come off. When the sail propelling the boat breaks, it’s as bad as it sounds. Decker is stranded in the Atlantic Ocean.
“Was the universe trying to tell me something was breaking the mast,” she said.
But Reynolds said it wasn’t the right boat for her.And he knew what the perfect boat was.His Bristol 36 was called the Tiama. , purchased a vessel while in Thailand during a 7 1/2 year solo trip completed in Kona in December 2021.
Reynolds set a world record as the first double amputee to circumnavigate the world solo on a yacht. And he noted that as the first person with Charcot-Marie-Tooth disease to sail solo around the world, Decker could be his second person to set a world record on that boat. .
Dustin also said, “Hawaii is where your heart is. Where to start and where to end. Where you learned all about the ocean. It seems you were right,” said Decker.
She returned to Kona in May 2022 and purchased a 35 1/2 foot yacht on board valued at approximately $65,000 and began working on the necessary repairs and upgrades, including installing a $10,000 engine.
To familiarize himself with the boat, Decker made a 21-day round trip to Palmyra Atoll. Reynolds went with her and showed more than ropes.
Decker’s disease causes instability on land, making it very difficult to navigate on a rocking ship’s deck. She always wears a harness and straps it down to prevent going overboard, she said.
“I crawl unabashedly, too,” she said.
Decker said Reynolds actually does better on the boat than she does. Reynolds was killed in 2008 after being hit by a drunk driver while riding a motorcycle in Waikoloa. He lost his left leg and left arm.
They share a common bond that they must learn to adapt and a love of the ocean.
Their 1,800-plus-mile journey was tough with constant squalls, 40-knot winds, no wind, and other inclement weather for sailing. And on boats things are always broken. Decker has already learned diesel engine 101, plumbing and how to fix it, or how to fix something that has stopped working. It is an extra burden and time-consuming task for people with illnesses who have difficulty turning a screwdriver.
“She’s lost some dexterity in her hands and has trouble grasping,” Reynolds said of Decker’s worsening condition.
However, when someone had to go to the top of the mast at sea to solve a problem, Decker used her leg to straddle the mast and burn her skin.
She learned her lesson, said Reynolds: “I should have worn pants.”
Decker said spending so much time with Reynolds learning about the boat and getting his advice was invaluable.
She hopes that three times will be a charm. She plans to begin her third round-the-world voyage around May when the weather opens. She also plans to start and finish in Kona.
But first she needs to get her boat in top shape and raise the necessary funds. She’s worked hard to be able to buy a boat with cash and get out of debt, but the long list of boat repairs she needs is expensive and she needs money to travel. Five years of many changes.
Reynolds told her she should give crowdfunding a try. Decker said he was hesitant at first, but he launched his GoFundMe called “Just a lap” for financial and emotional support.
She said it was an opportunity to spread awareness about her disease and help others. During a kayaking trip around the Big Island, she raised $10,000 for the Hereditary Neuropathy Foundation. The foundation’s mission is to fund research leading to the treatment and cure of Charcot-Marie’s Tooth disease.
“I want to continue to inspire people with this disease and disability,” she wrote. “I truly believe that you can do anything you set your mind to. So this journey is one that inspires every individual to challenge themselves, set goals, work towards them, share in all the triumphs and heartaches…it makes us feel most alive as human beings. It is what connects us.”
She wants to do it herself too.
“One day, I will become physically dependent on another person,” she said. Seeing her quality of life and pain, which is bad, is one of the biggest reasons I do things and live life to the fullest.
“I’m doing it now so I can tell really good stories when I’m in a wheelchair.”
