Shriners Children's helped her walk years before she set sail.
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.
Jenny looks at the horizon from her sailboat in the Pacific Ocean.
Jenny and her sister, as young girls, smile while sitting on a couch. Jenny's legs are in casts.
Jenny cooks dinner aboard her sailboat.
Jenny guides her sailboat through the ocean.
Pictured as a young girl, Jenny smiles while on standing on tip-toes.
Without my care at the hospital, who knows where I would be.
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.
