Solo sailor circumnavigates for a cause — a cure for disease that ails her

Pago Pago, AMERICAN SAMOA — With only a little over 300 people having sailed around the world single handedly, the 38-year old solo sailor from Hawaii with a rare neurological disorder, believes she can do it in three years.

Captain Jenny Decker arrived in Pago Pago Harbor five days ago, after being caught at sea by thunderstorms and squalls from hurricane Dora, saying she’d never been more proud of herself than when she made it to American Samoa.

She looks physically fit but has a medical condition where her brain sends signals to her arms and legs, but they don’t listen.

Ms Decker says there is no cure for her disease, so she’s trying to do this world circumnavigation to raise awareness to fundraise for research for a cure. In the process she will also attain a world record as the first solo person to sail around the world with Charcot-Marie-Tooth disease (CMT). It is named after the three Doctors' last names that discover the disease she has. Charcot-Marie-Tooth CMT is a group of inherited conditions that damage the peripheral nerves, and there is no cure for it.

She was smiling when she said: “Don’t judge the book by its cover. I may look physically fit, but unless we work together then you can see the struggle I have.  

“But this trip is really about creating awareness, for this disease that so many people are misdiagnosed for it.

“And to create more research so we can find a cure because it’s just crazy with our technology in medicine, I hope it'll help find the cure. I’m hoping it’s not going to help me, but people behind me, or younger than me with my disease so they don’t end up being dying.

“So I only have so many more years left of my life. And if I’m going to do it, I have to do it now.”  

Captain Decker is planning on taking three years sailing around the world, with breaks in between, like this trip to American Samoa was twelve days, the trip before that was 12 days.

She started from Hawaii, stopped at Christmas Island for emergent repairs and she was going to come straight here but she had to stop there, plus she got stuck in the Hurricane Dora weather.

“It should have been 9 days to ten days, but it took 12 and half days. I got into some really bad weather and I was very happy to make it here.”

This is just the beginning, for the Solo sailor where she has 3,000 miles in,  with about 27,000 miles more to go.

Her monohull with a single mast, Tiama, is 35.5 feet long, a year older than her Captain and owner. This is the second sailboat she has owned, but she started sailing on another boat in the Atlantic, then COVID 19 hit, and she had to go back to the US.

In 2021 she bought her first boat and sailed out, where the mast came off and it was totaled. She recalls when things go wrong at sea like a storm, it can’t be put into words.

“Tiama is a solid boat, she can handle it during the storm, keep her safe by reefing the sails when there’s high winds, put the electronics units away and talk to God.

“I talk to God a lot, he is in charge of my journey, he is in control. I talked to him a lot when I’m out there. God has always kept me safe, while the ocean is a living thing, it embraces me. God and the Ocean are in charge of everything.”

Captain Decker is confident with the support from her more experienced sailor friends, following her via messages on satellite, helping her on weather and decisions, and she needs that from more experienced people, lots of them in Hawaii, some she’s met in other places she’s sailed to.

She also talked about how she ended up buying her Tiama from a double amputee friend. He is one of the first double amputees to do so, world circumnavigation. “When I said I wanted to sail around the world my friend was getting ready to finish his in this boat,”

“He just went around the world, and he said, why don’t I come buy his boat and I take her around the world again.”

Furthermore, “we met up in Kona Hawaii, got it fixed up together and from there Tiama will have two world records.”

When asked about how she’d be sustaining her journey, Captain Decker says she’s an ICU Nurse by profession and during the COVID19, she was doing travel ICU assignment and now doing a lot of corresponding Go Funding and people are literally helping her out. This Journey she’s called, “Just a lap around the world” is the mental part of it.

 The Go Fund Me helps her with money to fix Tiama that provided her with a new engine, new batteries, steering, rigging, as anybody who owns a boat would know those things break and are expensive. She produces her own energy from the sun. 

Tiama was built in 1983, one year older than her Captain with fiberglass body and teak trimmings. Her owner says, she’s more graceful in water than on land with her disease, where as she tries everything in water, open ocean swimming, on a canoe team in Hawaii, SCUBA diving, anything that has to do with water, and with sailing she got the interest from other friends, until she got her own sailboat and now her second.

It’s hard to be away from home, and families, and arriving in American Samoa was so welcoming, she said.

Adding that she hasn’t had communication with her friends and families, and when she arrived here, there were shops, internet connection, got a cheeseburger and fries that she longed for, plus riding the bus was so much fun, everybody was so nice, it’s almost like arriving in Hawaii.

“I’m not comparing this to Hawaii, but Hawaii to me is my family and friends and everybody is so kind, ohana and family, and I feel that immediately coming to shore here. It’s been great, even the Customs and Immigration guys, like everyone has just taken me in. Being solo at sea for that long, it was great how I was taken in since I arrived. I got in Saturday morning, and I didn’t get to go to shore ’til Monday.”

Ms Decker has eaten in two places and has already checked out other places in town like the Ocean Center and hanging out with the locals.

She is going to Fiji from here, but she may change her plans, and go to see Western Samoa.

However, she is not totally alone onboard, Captain Decker has a 16-year old companion, Mr Romeo. He’s been sailing on and off for the last 5 years and is a very pleasant boat guard.

“It’s nice to have something else to take care of, than worry about the boat all the time.”  

While, from here on she plans to sail to Fiji, its been highly recommended to check out the Teuila Week, in Samoa, first week of September, so she may head west before Fiji and Vanuatu and from there to Australia, “then to the Indian ocean but the weather controls everything I do.”