Jenny Decker has Charcot-Marie-Tooth Disease that affects her motor and sensory skills but she is determined to sail solo around the world via the Panama Canal to raise awareness of the rare neurological condition

Jenny Decker is in a race against time, and her own body.

The 40-year-old sailor has Charcot-Marie-Tooth Disease (CMT), a hereditary condition which affects the function of the motor and sensory peripheral nerves, causing weakness, numbness and the wasting of the muscles below the knees and the hands.

To raise awareness of the disease, she aims to become the first woman with CMT to sail solo around the world via the Panama Canal aboard her 1983 Bristol 35.5 C, Tiama. She is also partnering with the CMT Research Foundation, which raises money to fund research into treatments for CMT and ultimately, a cure.

“I have been in the medical profession for nearly 18 years now and it is not uncommon for me to meet people who have never heard of Charcot-Marie-Tooth Disease. My mother has it, and mine is in a worse state now than hers was at my age. The goal is to raise awareness of this disease and inspire those with any ailment that you can do anything you put your mind to,” said Jenny Decker, who trained as a trauma nurse.

A woman sailing on a boat

Jenny has sailed over 10,000 miles, 4,000 of them solo. Credit: Jenny Decker

Having learnt to sail as an adult, Jenny initially worked in the commercial fishing industry in Alaska to gain experience of life at sea before leaving on her circumnavigation.

“I set my goal to sail around the world in 2017 but I had never lived onboard and wanted to make sure this was something I could really do before buying a boat. I did two seasons of commercial fishing, working as a greenhorn; 100 days out at sea which really prepared me for being cold, wet, tired, and exhausted but still having to work,” explained Jenny.

“I was in storms where we were a few miles from a boat that capsized and lost two of their greenhorns, we had a fire in the smoke stack that we had to put out. I learned a lot about mechanics and navigation. As a solo sailor, you have to be able to fix everything. It was a good experience both mentally, and financially.”

By 2019, Jenny had bought her first boat – the Hunter Legend 35.5, Made of the Sea – and sailed to the Bahamas before the COVID-19 pandemic saw her return to the US where she worked several COVID nursing assignments.

Two people on a boat sailing

Sailing with Dustin Reynolds, the first double amputee to sail solo around the world via the Panama Canal. Credit: Jenny Decker

Initially, she had planned to sail the Hunter Legend through the Caribbean to the Panama Canal but crevice corrosion meant the voyage was quickly cut short.

“I was sailing in 15 knots of wind, close-hauled when the headsail chainplate gave way and the whole mast came down in a few seconds. A rigging survey had been done on the boat before I left. The headssail chainplate was seven years old and it must have had microcracks. I spent a few hours after the dismasting trying to see what I could save but in the end, I had to cut most of it away.”

Jenny Decker returned to Hawai’i, her dream of circumnavigating seemingly in tatters.

But help came in the form of friend Dustin Reynolds. The Kona sailor had just become the first double amputee to sail around the world solo via the Panama Canal. He suggested to Jenny that she buy his Bristol 35.5 C, Tiama.

As the boat was already set up for a disabled sailor, Jenny only had to make a few modifications to meet her sailing needs; it was also refitted to sail around the world again, including installing a new engine.

A boat anchored in a bay with palm trees

This is the third circumnavigation of the world for the Bristol 35.5 C, Tiama. Credit: Jenny Decker

“I put in a few more handholds and changed some of the winches but the boat was well set up. Walking and balancing even on land is difficult, so I did everything I could to make it easier onboard. Currently, my hips are often dislocating, as do my knees. I have atrophy through the muscles in my legs. My left ankle is completely rolling out where I have no stability. I crawl out on the boat. I do not depend on the physical strength of my legs to keep me on the boat. I use my arms, and I am always tethered in,” said Jenny, who has logged more than 10,000 sailing miles, over 4,000 of them solo.

Hand dexterity is also an issue.

“It is like my brain is sending signals to my arms and legs but they don’t want to lift so everything is delayed. It takes some ingenuity to do fine motor skills; even taking the top off a water bottle requires thought. Cotter Pins (split pins) are my arch-enemy on the boat. I keep pliers and vice grips around me constantly. I had a non-tailing winch so I am putting in a self-tailing winch at my mast, as I have to go up to the mast for everything so I am trying to make it easier.”

Jenny has a system of jacklines to minimise any risk of injury or falling over the side. She also floats a 30m line behind the boat while sailing offshore and ensures her PLB is ready to activate on her lifejacket.

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In 25 knots of wind, Jenny finds it difficult to reef with the furler, even with the mainsail shielding the headsail, so she tends to sail more conservatively. She is also self-insured.

“I am really particular about my body movements, and I have to pay attention to this, especially when it is super rough. I sail reefed more than most sailors in certain conditions, anticipating if something is going to hit me so I am not damaging rigging or ripping sails.”

Jenny Decker initially wanted to sail around the world non-stop but this is no longer an option.

“After a 12-day passage, my muscles are so fatigued I have to stop somewhere. I can knock out 1,200nm passages but I need time to recover. I once dislocated my knee and could not get it back in so I tied it up with a sail tie and waited til I got back into port.
I want to knock out those big passages; I do not want to get to a situation where I am so close [to the finish] and my body physically can’t do it, or it is not safe to do it, but currently, I really know I can do this.”

A woman wearing a lifejacket with her dog on a boat

Jenny sails with her beloved dog, Romeo. Credit: Jenny Decker

Although Jenny is sailing solo, she is never truly alone as her 17-year-old dog, Romeo accompanies her on every leg.

The pair left Hawai’i on 28 June 2023.

Their first stop was unscheduled at Christmas Island to make engine repairs; the exhaust line wasn’t long enough allowing water to enter the engine while sailing in following seas. Jenny fixed this by installing a “flapper” to prevent water from entering the line before cleaning and servicing the engine.

This was followed by a rough 12-day passage to Pago Pago in American Samoa, and then to Vuda, Fiji, where they are waiting for the end of cyclone season.

Sailor Jenny Decker sailing with her dog

Jenny is a trained trauma nurse and has used some of the grant money from the Ocean Cruising Club to stock up on medical supplies and buy a AED. Credit: Jenny Decker

Jenny will set sail again next month for Vanuatu and hopes to be in the Atlantic Ocean by October 2025, with stops planned in the Solomon Islands, Indonesia, the Seychelles, Madagascar, and the Cape of Africa. She will then transit the Panama Canal for the Marquesas and back to Hawai’i.

She was recently awarded an Ocean Cruising Club Challenge Grant to help towards the cost of the voyage and equipment.

Jenny Decker’s voyage can be followed at or via Instagram @just_a_lap

Enjoy reading Jenny Decker: ‘Why I am in a race against time to sail alone around the world before it’s too late”?

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