Jenny Sails Solo Around the Globe

Shriners Children's helped her walk years before she set sail.

Former Shriners Children’s St. Louis patient Jenny Decker is not a stranger to adventure.

In 2016, Decker made history as the first female and first solo kayaker to go around the Big Island in Hawaii. Today, she is setting her sights on sailing around the globe, traveling nearly 26,000 miles on her boat solo, while raising awareness for a rare degenerative nerve disease that can cause muscle weakness.

She set sail in the South Pacific in June of 2023 and is hoping to make it to the Atlantic Ocean in October 2025. She said the skills that she gained from the care she received at Shriners Children’s inspired her resilience and will stick with her on her voyage.

When she was 4, Decker’s parents were looking for an answer for why their daughter was struggling to walk. After receiving several misdiagnoses from multiple doctors, her parents were inspired to get another opinion and visit Shriners Children’s St. Louis.

Without my care at the hospital, who knows where I would be.
Jenny, former Shriners Children's patient

The team at the hospital helped Decker as she underwent several surgeries, spent time in braces and a wheelchair, and went for treatment throughout her childhood to help regain strength and learn how to walk properly. Decker was eventually diagnosed with Charcot-Marie-Tooth (CMT) disease at age 19, which is the reason her muscular function and ability to walk were impaired.

“I am so grateful that my parents took me to Shriners Children’s, since I don’t know if I would have had that chance to be independent at all,” said Decker. “I have no idea where I would have been. Some of my memories of Shriners Children’s are when I was around age 4 and underwent several surgeries to fix my feet; I was finally able to take my first steps on my own. I remember everyone watching me while I held a railing and everyone was cheering me on at the hospital. Without my care at the hospital, who knows where I would be.”

Decker said she knows that eventually she won’t have the physical or muscular strength she has today, since as she ages her disease will progress. Her disease has inspired her to partner with the CMT Research Foundation to create awareness and contribute to finding a cure. Although there are challenges with sailing solo, such as navigating, finding nutrition, and repairing the boat by yourself, Decker said she’s determined.

“In today’s age, sometimes you have to do something extraordinary to create awareness,” said Decker.

“Shriners Children’s has contributed to everything in my life. I am a big believer that things aren’t going to go the way you expect them, and it's about how you perceive it and deal with it. I hope my journey inspires people to keep going with what you believe in and what you’re trying to do. That is exactly what my parents did for me, taking me to Shriners Children’s and trying to push me to be able to walk. I’ve hit a lot of roadblocks along the way that I could have quit with every bad thing that happened. There are days on the boat when I’m worried about where I’m going to eat next, what the weather will be, how I’m going to navigate and make sure my boat is OK. I know I can complete this and there’s nothing that’s going to stop me.”

Decker graduated from SIUE’s nursing program in 2006 and was an ICU nurse for nearly 20 years before heading out on her solo sail adventure. People can follow her journey on Instagram and Facebook at the handle @Just_A_Lap.

Jenny Sails Solo Around the Globe

Jenny, a former Shriners Children's St. Louis patient, set sail in the South Pacific in June of 2023 and is hoping to make it to the Atlantic Ocean in October 2025. She said the skills that she gained from the care she received at Shriners Children’s inspired her resilience and will stick with her on her voyage.
View Transcript

Speaker 1:

Honestly, it could have contributed to exactly everything in my life because I am a very big believer of things are not going to go the way you expect them in life. And it's all about how you perceive that and deal with it versus what's actually happening to you. And to just keep going for what you believe in and what you're trying to do. And that is what my parents did with a misdiagnosis and no one being able to help and kept pushing for me to find a way to be able to walk and live an independent life. And Shriners came in as that thing that they kept pushing for, that allowed it. And even throughout a lot of the journeys in my life, I've hit a lot of roadblocks even on this journey. This is so many years in the making so many things that I could have easily just quit.

But every bad thing that happened, I felt led me to exactly the right point where something good happened and made it achievable. And so whatever the route was that led my parents to Shriners, all of that was meant to happen. And then to maybe even have that diagnosis of cerebral palsy, to sit over the weekend and think about it, to keep pushing, to try to find an answer of what was wrong with me, or at least the solution to the problem. Problem. So I do all my own weather routing, I do all the navigation, obviously, all the sailing. The sailing part's probably the easiest. It's everything up to that, all the repairs. And so solo sailing, you're awake for endless hours. Your sleep deprived, your nutrition isn't great. The physical demand of moving all the time, even when you're sleeping, is just physically exhausting. You feel like you've been hit by a car most of the time you're on passage. And then cyclone seasons started early and a cyclone came in October. So instead of having six months to cross through the Pacific, I ended up with about three and then a cyclone hit where I was. And so I had to take the boat apart, all the sails off, chain it to the bottom. I'm in Bunda Marina in one of the safe cyclone pits in South Pacific, and so if I lose the boat in a cyclone, it's over. I can't financially go through much more with the boat.

So I decided to stay safe for the cyclone season because I'm in one of the safest places you can be hoping to be in the Atlantic by October of 25, which is still going to be very quick. I have the Indian Ocean.

Next, which is pretty unpredictable. Once I finish the Indian Ocean, I feel like I'll be able to breathe a little bit better. At this point, nothing's going to stop me. I've worked too hard, I've come too far, so that's awesome. I think it'll gain a lot of momentum once I get further.

A Solo Sail Around the Globe

Shriners Children's cheers Jenny on from St. Louis.

Jenny gazing at sunset from sailboat deck

Jenny looks at the horizon from her sailboat in the Pacific Ocean.

sister and Jenny, wearing casts on legs

Jenny and her sister, as young girls, smile while sitting on a couch. Jenny's legs are in casts.

Jenny cooking in galley

Jenny cooks dinner aboard her sailboat.

Jenny sailing on open ocean

Jenny guides her sailboat through the ocean.

young Jenny on tiptoes

Pictured as a young girl, Jenny smiles while on standing on tip-toes.

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