Kona Nurse with Charcot-Marie-Tooth Disease Will Circumnavigate the Globe Solo: Part 1



Kona nurse Jenny Decker, 38, left Honokōhau Small Boat Harbor, Kailua-in Hawaii on June 28, 2023. A recent article in BigIslandNow announces that Jenny is ready to circumnavigate the globe. The trip is happening despite her rare progressive neurological disease that at times has restricts her movements.

When Jenny was three years old doctors at the Shriner’s hospital agreed to a pro bono operation for her to correct certain abnormalities.

More recently, Jenny received a diagnosis of Charcot-Marie-Tooth (CMT) disease and learned that the rare nerve disease would eventually weaken her muscles. Jenny received this news about the same time her mother was also diagnosed with CMT. The revelation only made her more determined to conquer the devastating disorder.

Jenny Decker’s disease, Charcot-Marie-Tooth (CMT), is named after the three doctors who first discovered the disease in 1886. CMT is a progressive neurological disease that affects approximately 2.6 million people worldwide. Yet there is no cure.

The Third Time is the Charm

Jenny’s previous trips were thwarted by COVID-19 and the loss of her first sailboat as a result of a broken metal chain plate. She had sailed several hundred miles when the ‘mishap’ split the mast, leaving her stranded at sea.

Jenny has been preparing for the trip in earnest for the past three years. She left Hawaii with a fully stocked vessel (3 months of food) and Romeo, her 6-pound Maltese Yorkie. The vessel has a desalinator that converts salt water into drinkable water. Jenny also had to make certain modifications to the boat to accommodate her illness.

Jenny is a trauma nurse and has hospital supplies including IV bags and IV start kits.

She is familiar with every inch of the boat and is able to make the most needed repairs.

Jenny and CMT

Jenny describes her symptoms as her brain signaling her limbs but at times they do not respond. She falls often and is constantly in pain.

Anyone who knows her will agree that although her body may not be in optimum shape for the trip, her mental attitude is that of an experienced sailor with tremendous motivation.



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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