Fenton woman with rare nerve disease plans to set a record sailing solo around the globe

Published: Jan. 9, 2023 at 5:59 AM CST
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ST. LOUIS, Mo. (KMOV) - Out in the open water is where 38-year-old Jenny Decker calls her home away from home.

“I’m a member of an outrigger canoe team, open ocean swimmer, scuba diver, so I just fell in love and I’m way more graceful in the water than I am on land,” said Decker. “In 2016, I was the first solo person to kayak around the big island of Hawaii, and that was 20 days at sea.”

Decker was born and raised in Fenton, but ever since she graduated college, she’s taken up a love for sailing. It’s a passion that does not come easy after everything she’s been through.

“All growing up, they weren’t exactly sure what was wrong with me. I kept getting misdiagnosed, and still by the age of three going into four, I wasn’t able to walk,” said Decker. “Shriner’s hospital did a pro-bono surgery on me to fix my legs.

After years of not knowing why she was losing her motor skills, at 19 Decker was diagnosed with Charcot Marie Tooth disease, or CMT.

“It took my mom being diagnosed later in her life and then she was like, ‘oh my gosh, this is what my daughter has’,” she said.

CMT is a rare degenerative nerve disease that weakens the muscles over time. Like her mother, Decker says she could eventually end up homebound, in a wheelchair.

“It’s like my brain is sending signals to my arms and legs and they don’t get it. And so, I fall a lot, have tons of pain all the time, lots of surgeries. Fine motor skills are very difficult to do. Hand tremors,” said Decker. “I don’t have a lot of time.”

It’s with the time she still has to walk and move around that Decker is now setting sail on a new goal.

“I’m attempting to be the first solo sailor to circumnavigate the globe with Charcot Marie Tooth disease,” said Decker.

Decker says she plans to start from Hawaii and head west. With her conditions, she expects the journey will take about three years.

“I will be departing from Hawaii May or June depending on [the] weather to get to the southern hemisphere,” she said.

It’s been a goal several years in the making, but after dismantling her own boat in the Atlantic during a solo trip, her friend, a double amputee who also set his own record circumnavigating the globe via sailboat, lent her his boat for the journey.

“I make a lot of modifications on the boat, I have a lot of safety gear because walking is difficult for me on flat land, so now put you in a moving boat. I obviously don’t want to go overboard. I don’t want to get injured way out at sea,” said Decker. “Some of these things have to be done quickly...but meticulously and so because of my disease everything takes me a little bit longer and slower, so I’ve been modifying things on the boat to help with that.”

Decker says while she will have to do the journey on her own in order to achieve the solo world record, her first mate, her dog Romeo will also be along with her for the ride.

“I wish he helped with the lines and sails a little bit more and made me a sandwich now and then, but he’s a good companion,” she said.

Decker has been using crowdfunding methods like a GoFundMe o help prep her boat for the journey, and hopes that once she gets going, she can use donations to also give back to organizations researching cures for CMT.

“I really wanted to do it to create awareness for this disease, because how are we supposed to find a cure if no one knows what it is or want to donate money for research,” she said. “[I hope ] that people will find this story inspiring, learn more about CMT, want to research it or get more research done so maybe there will be a cure in my lifetime, but also to give somebody else younger than me a cure so that they can live a physically able body life.”

It’s also a once in a lifetime opportunity to prove that even with CMT, she can still achieve her goals.

“I want to look back and be like, ‘I lived my life to the fullest while I still can before I’m in a wheelchair’,” said Decker, “[and] to inspire anybody with this ailment that you can do anything that you put your mind to, and anybody with a disability for that matter.”