Jenny Decker May Have Charcot-Marie-Tooth Disease, but She is Sailing Around the Globe

One year ago, Jenny Decker age 40 began her journey around the world sailing 3,200 miles to her first stop in Fiji. She reported to Practical Boat Owner that she will be docked in Fiji a few more weeks while she waits for the cyclone season to end.

Jennie has Charcot-Marie-Tooth disease (CMT), a hereditary condition that has already confined her mother to a wheelchair. Jenny acknowledges that at some point in her life she will also be using a wheelchair.

About CMT

CMT is a hereditary disorder with no known cure. It affects sensory and motor peripheral nerves. The result is numbness, weakness, and gradual wasting of muscles below the hands and knees. About 126,000 people in the United States and 2.6 million worldwide are living with this disease that has no cure.

Jenny was unable to walk during her early childhood years. When she was four years old the St. Louis Shriner’s hospital performed a surgical procedure that gave her the ability to walk.

About the Trip  

Jenny will be at the helm of her 1983 Bristol 35.5C named Tiama. She will be accompanied by her loyal sailing partner, a 6-pound Maltese named Romeo. This will be the Tiama’s second time around the globe. Jenny bought the Bristol from her friend Dustin Reynolds, a double amputee who is a Guinness World Record holder. Dustin is Jenny’s role model and mentor and the first double amputee to sail solo around the world.

Jenny wants to be at the equivalent level with CMT. Jenny’s first boat was damaged after a headsail chainplate broke and the entire mast collapsed. Jenny will be retrofitting Tiama with winches and other special hardware that will accommodate her physical condition. She explains that it is difficult for her to grab lines so she crawls around the boat and must hold on to everything.

Tiama is equipped with a desalinator that converts ocean water to drinking water. Jenny feels confident that her boat is well equipped, but she will be constantly upgrading all supplies during the trip. She was very grateful for the support she received through crowdfunding and is looking for sponsors. As she explains, if something is broken under the boat, she has no choice but to dive under the boat for repairs. She must be self-sufficient as well as using her nursing skills.

What’s Next?

Jenny is looking forward to several parts of the trip she has always wanted to see. For instance, the island of Tuvalu near Tonga that is predicted to be the first country to disappear due to a rise in sea levels caused by climate change. If the weather cooperates, Jenny will have a lot of time to read and listen to various podcasts. Fishing is a given as well as communicating with friends and family through a satellite system. Jenny’s goals are, in order of priority, raising awareness of CMT and becoming the first woman to sail solo around the globe by way of the Panama Canal. Hopefully this will help to spread the word so that funds can be raised and lead to a cure.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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