A Nurse With CMT is Preparing to Circumnavigate the Globe



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.

KCTV5 recently featured an article about Jenny, her disease, and her goal. She began thinking about the trip seven years ago. As her mother became more dependent on a wheelchair, Jenny became more determined to make the voyage and bring awareness of CMT before the disease affects her permanently.

As part of her preparation for the trip, Jenny, who was born and raised in Fenton, Michigan, reflects back to 2016 and her first challenge on the water. Jenny paddled in a kayak around Hawaii. The solo trip was a “first” and much shorter than her upcoming circumnavigation. At times, though, it was just as treacherous. Jenny paddled for over 20 days and three hundred miles. She faced conditions with swells ten to twelve feet high.

Today her “resume” is impressive. Jenny lists being an open ocean swimmer, on an outrigger canoe team, and a scuba diver.

From Nursing to Commercial Fishing

She received her nursing degree in 2017 and became a traveling nurse for a hospital on the Big Island of Hawaii. She realized that she really had very little sailing experience and found the answer by joining a sailing club to learn about living full-time on a sailboat.

That was not challenging enough for Jenny. She left nursing temporarily and took a job in Alaska on a commercial fishing vessel working sixteen to eighteen hours a day.

Rather than dismiss the one hundred days working on a “no frills” vessel without a head, Jenny really fell in love with the sea and went back again for another season, but this time on a somewhat better-equipped vessel. Funding the circumnavigation trip was her ultimate goal.

When CMT Takes Over

Jenny has a constant struggle coordinating her motions and maintaining control of her hands and legs. The more she focuses on trying to button a blouse or even open a bag of snacks, the more difficult it is to control her movements.

Translate these issues to navigating in a sailboat and you are presented with a definite challenge. Jenny is well aware of these challenges, especially when she sees her mother wheelchair-bound as a result of CMT.

 And then there is the issue of her balance, which requires Jenny to wear a harness to avoid falling overboard.

Choosing the Perfect Sea-Worthy Boat

In 2020 Jenny was about ready to announce her readiness to begin the journey. She sold everything she owned and began searching for the perfect sailboat.

Her search began in Florida where she bought a sailboat for the voyage. Jenny and her partner at the time took off on a short practice run and then went back to St. Louis. Jenny put the boat in storage and took a nursing assignment during the COVID-19 crisis. She worked night shifts attending to dying COVID patients.

After a painful breakup with her partner, Jenny called her friend Dustin. He encouraged Jenny and motivated her to “go it alone” after her emotional breakup.

Jenny bought out her ex-partner’s share of the boat and began to prepare for her solo trip. However, she had only sailed a few hundred miles when a metal chain plate that fastens the stays to the hull broke loose. The mast split, leaving her stranded at sea.

The incident caused Jenny to have second thoughts about the trip, but Dustin said the boat had not been right for her and he would help her find the perfect boat. It turned out to be his own Bristol 36 called the Tiama. It is a 35.5 ft liveaboard sailboat worth $65,000.

Dustin bought the Tiama in Thailand as he ventured out on his own 7.5-year solo trip. Dustin succeeded in completing his own record-setting trip in December 2021 in Kona. He set a world record as being the first double amputee that successfully circumnavigated the globe in a sailboat.

Dustin reignited Jenny’s dream by reassuring her belief that Jenny and the Tiama can set a new world record.

In May 2022, Jenny flew to Kona where she purchased the Tiama. The boat needed upgrades and repairs including a new engine that cost $10,000.

Jenny took an 1,800-mile practice trip to Palmyra Island with Dustin along to help her become familiar with the idiosyncrasies of the Tiama. The island is located about a third of the distance between America Samoa and Hawaii.

Dustin was hit by a drunk driver in 2008 and lost his left arm and left leg. Jenny admires the way he can move around the boat with relative ease.

Their 1,800-mile trip included 40 knot winds and extremely poor sailing weather. As expected, parts of the boat broke down during their trip. Jenny is now experienced in plumbing, attending to mishaps in the diesel engine, and even straddling the mast for repairs while at sea.

About the Trip

 Jenny hopes to begin the sail in May of this year, starting and finishing in Kona. She still hopes to raise money for boat repairs and for her journey which is anticipated to take three to five years.

Although she initially hesitated to try crowdfunding, Dustin encouraged her. Jenny’s GoFundMe is called “Just a Lap” and affords not only needed financial help but also emotional support.

Jenny was able to raise $10,000 after her Big Island kayak trip that she donated to the non-profit Hereditary Neuropathy Foundation. The foundation is committed to raising awareness and increasing accurate diagnosis of CMT, as well as funding research leading to treatments and cures.

She hopes to inspire not only CMT patients but patients with any disability. She believes that the disabled like herself and Dustin should set goals and then follow their hearts.

Patient Worthy’s Rose Duesterwald will continue to post updates on Jenny’s voyage once she begins her trip.

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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