Jenny Decker — “Just a Lap” for CMT

Jenny Decker is attempting to make it into the Guinness Book of World Records as the first person to sail around the world solo with Charcot-Marie-Tooth disease (CMT). She expects the journey to take 3 years and will visit almost 30 countries along the way. She has even given the trip a name: “Just A Lap.”

Jenny’s disease (CMT 1A) is an inherited neurological disorder that affects the peripheral nerves that transmit signals to your feet, legs, hands, and arms. CMT is usually inherited and is degenerative, so it gets worse over time.

CMT affects one in 2,500 people (about the same prevalence as cystic fibrosis), including 150,000 Americans and nearly 3 million people worldwide. At the moment, there is no treatment or cure for CMT.

“It’s as if your brain is sending signals to your body but there is a disconnect. All fine motor skills are extremely difficult, and hand tremors add a level of ingenuity to completing even simple tasks like brushing your teeth, opening things or getting dressed. Walking has become something to be consciously planned every step to avoid falls and injuries. Most patients are in a constant state of pain.”

Because of the early effects of CMT (delayed reflexes, lack of feeling, inability to step flat or even walk) Jenny was misdiagnosed with cerebral palsy. Some doctors thought she might never walk. But her life changed after having pro bono surgery at the Shriners Hospital in St. Louis, MO. where they did procedures on her Achilles tendons and lower legs to give Jenny the gift of walking. But she had yet to be correctly diagnosed.

“After my surgery I had casts and then braces and PT. I joked about having ‘Forest Gump’ braces,” says Jenny. “But I learned to walk without aids, although I always was clumsier than other kids. I experienced hand tremors. Tripping and falling was also a regular part of my life. School physicals to play sports raised concerns that led to MRI’s and scans to rule out brain tumors. To no avail, and with no real answer to my ailments, I just went on about life with what seemed like ‘normal’ to me.

“It wasn’t until I was 19 and in college that my mom (who also suffered from similar systems) saw a podiatrist who asked her if she had Charcot-Marie-Tooth disease. When she asked what that was, and he described it, she knew this is what we both had. She literally called me and said “I think I just found out what is wrong with us.

“I then had my first appointment with a neurologist for a nerve conduction study and EMG. The result was an immediate diagnosis of CMT Type 1A and for the first time in my life my issues had a name.”

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 and inspire those with any ailment to ‘go for it’, whatever ‘IT’ is. To inspire the world 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 really good stories.

“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.”

“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. Although my efforts will not make a difference in my disease outcome, I am hoping to help those behind me. My message has always been that we can do anything we put our minds to despite any physical attributes or limitations.”

Nevertheless, Jenny is concerned about how the progression of her CMT will impact her journey. During a trip to Palmyra Atoll in the Northern Hawaiian Islands in October 2022, her legs got so fatigued she dislocated her knee and couldn’t get it back in place. She arrived in Kona with her leg tied up “like a pink flamingo” until she could get her knee put back in place. Still, no matter the challenges, Jenny is optimistic she’ll be independent enough to finish her sail. Two previous attempts failed not because of her ability, but due to the COVID-19 pandemic and a disastrous dismasting of her previous boat caused by a faulty chain plate.

Jenny left on Just a Lap from Hawaii on June 28th, 2023, and thus far has traveled over 3,200 miles alone through the Pacific Ocean and is planning her circumnavigation along the equatorial line based on storm seasons to be in safe zones. 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. “It should have been 9 days to ten days, but it took almost 12 after being becalmed for days. 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.

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. I have often said that their knowledge and skills are the reason Just a Lap was saved and able to start putting miles under the keel. 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.”

She has all her medication as well as medicine for her first mate, a 6-pound Maltese Yorkie named Romeo. “I do have medicine on board if God forbid, I have to put him down at sea,” she said. “You have to be prepared for everything.”

As she sails around the world, Jenny is excited to spend time in several locations. She is looking forward to spending time in Vanuatu, an archipelago in the Pacific Ocean near Fiji, and Madagascar, an island country lying off the southeastern coast of Africa.

While alone at sea, Jenny spends a lot of time reading, listening to podcasts, fishing and communicating with people through a satellite messenger system. When there are high winds or bad weather, she puts the electronics away to focus and talks to God and the ocean.

“I talk to God a lot, He is in charge of my journey and the elements, He is in control. God has always kept me safe and the ocean has always embraced me. God and the Ocean are in charge of everything and there is peace in accepting that.”

You can follow her Just A Lap challenge on:

Facebook https://www.facebook.com/justalap/

Instagram https://www.instagram.com/just_a_lap/

TikTok. https://www.tiktok.com/@justalap

Help The CMT Research Foundation find a cure for Jenny and all of those impacted by CMT.

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Donations to “Just a Lap” is not a donation to CMTRF, and thus, not tax deductible.