Editor’s Note: This story is a continuation of Jenny Decker’s global sailing voyage. To see the original article, please click here.
Jenny Decker’s journey called “Just a Lap” continues.
Patient Worthy proudly joins the CMT foundation in cheering Jenny across the finish line. Jenny will have sailed about twenty to twenty-five thousand miles since she left Hawaii in June of 2023.
What is it like living with CMT?
“In the early stages even simple tasks [are difficult] like brushing your teeth, opening things or getting dressed. Walking has become something to be consciously planned at every step to avoid falls and injuries. Most patients are in a constant state of pain.”
Because the disease is progressive, her problems will get worse, so Jenny is in a race against her CMT.
“At some point, I will no longer be able to control my extremities and unfortunately will be completely disabled in a wheelchair. Before this disease steals my body, I want to make a positive impact on our communities.”
Jenny wants to inspire others that
“You can truly do anything you put your mind to.”
Just a Lap
“It’s just a lap, no big deal. That’s part of the mental thing for me. One day I am going to be physically dependent on others,” she says. “I know that it’s coming. I see what happened to my mother and her quality of life and pain. I mean it’s bad. It is one of the biggest reasons I do these challenges and live my life to the fullest. I’m doing it now so when I am sitting around in a wheelchair, I can tell some good stories.”
“I have made it my life goal to create awareness about this rare, debilitating disease through adventurous ocean endeavors in hopes to create more funds for research towards a cure.”
Jenny left on Just a Lap from Hawaii on June 28th, 2023.
“I have had some truly challenging moments and with an early start to the cyclone season I was very happy to make it to Vuda, Fiji for safe haven.”
She is taking this time to make necessary repairs, gather supplies, and spread her message. She stopped at Christmas Island for emergency repairs after a tough first passage and then another rough 12 days to Pago Pago after Hurricane Dora affected her passage in the southern hemisphere.
Her vessel is a 1984 Bristol 35.5c sailboat called the Tiama, with quaint amenities, including a fridge with a freezer and a gimbal stove, which rocks with the boat. Jenny departed with three months’ worth of food stored on the boat, including a desalinator which makes salt water into drinkable water. Tiama is also stocked like a hospital from trauma kits with sutures to IV bags and start kits.
“Support for my voyage has come from unexpected directions.”
“Yanmar Marine America, a company that builds and creates marine engines and other marine drive systems, gave me a brand-new engine — worth $20,000 — with no strings attached. K & C Mobile Marine dedicated endless hours installing this engine, setting up a haul out, and helping me out in every way they could. They often worked through the night on the installation so that I could make the southern hemisphere sailing season. The Everyday GSD podcast and host Darin Bibeau donated money to upgrade my battery bank to lithium batteries so that my safety and the pulse of the boat were brand new. West Marine Honolulu gave me a major discount on parts and bottom paint while working on my extensive refit of SV Tiama. The Hawaiian community truly came together showing they believed in my journey. I received local support through benefits hosted by fellow sailors at the Hawaii Yacht Club and my favorite local Kona spot. Willie’s Hot Chicken, giving me assistance in finishing all the final details and provisioning of parts/supplies to depart confidently.”
As a trauma ICU nurse for 17 years, Jenny is often the only medical professional in the remote areas where she anchors. So, she has volunteered her time and nursing skills resolving multiple medical emergencies.
“I want to continue to provide medical aid where needed throughout my sailing. I am currently working on stocking my vessel with more medical supplies and an AED (automatic external defibrillator) to be able to supply lifesaving medical care along my journey.”
As she sails around the world, Jenny is excited to spend time in Vanuatu, an archipelago in the Pacific Ocean near Fiji.
Jenny says she talks to God a lot because he is in charge of her journey and the elements. She finds peace in accepting that God and the Ocean are in charge of everything.
You can follow Jenny and photos 0f her Just A Lap challenge on:
Help The CMT Research Foundation find a cure for Jenny and all of those impacted by CMT.
“My solo circumnavigation with my disability is my attempt to hopefully awe, inspire, and educate as many people as I can in this world by sharing an experience that so few have accomplished. My physical and mentally demanding trip is not only for personal growth, but more importantly to truly inspire, bring curiosity out of adventurous souls, help individuals summon inner strength, and continue to educate those I am taking around the world with me about our oceans, the strength of the human spirit and Charcot-Marie-Tooth disease.”
