Charcot-Marie-Tooth Patient Overcomes Her Disability by Sailing Solo Around the Globe

Jenny Decker of Fenton, MO. interviewed with KMOV4 explaining that she was unable to walk when she was three years old due to a rare disease called Charcot-Marie-Tooth disease. Doctors at the Shriner’s hospital volunteered to operate pro bono and were able to correct abnormalities in her legs.

Jenny is now 38 years old and about to begin a three-year sailing venture around the globe. Her resume for the trip is very impressive. Jenny is a member of an outrigger canoe group. She is an open-water swimmer and scuba diver. Jenny likes to say that she is more graceful in the water than on land.

In addition, in 2016 Jenny became the first person to solo around the Hawaiian island which was a twenty-day trip in treacherous waters. Needless to say, Jenny has a passion for being in and on the water. Her current passion is sailing.

About the Diagnosis

It was years before Jenny received a diagnosis of Charcot-Marie-Tooth disease and learned that the rare nerve disease would eventually weaken her muscles. The revelation came to her doctors after her mother was also diagnosed with CMT.

Jenny realizes that she may end up wheelchair-bound just like her mother.

Jenny’s symptoms do not resemble an athlete preparing for a trip around the globe. She falls often and has continuous pain. She senses that her brain is signaling her limbs but they do not always respond. She has hand tremors.

Although her body may not be in optimum shape for the trip, her mental attitude is that of an experienced sailor with tremendous motivation.

Her plan is to begin the journey from Hawaii in May or June and then head west. She estimates that it will take around three years.

The trip has been in the planning stage for over three years. Jenny previously dismantled a boat on a solo Atlantic trip and is now using a boat borrowed from a friend who is a double amputee. He made history in his own right sailing around the globe.

Jenny explained that it is necessary to make modifications to the boat to accommodate her illness. She keeps various safety gear as walking on flat land is difficult enough. Jenny attempts to make the adjustments herself and admits that the pace is definitely a little slower but she is a self-described meticulous worker. Jenny is truly an inspiration.

Although the trip is billed as a solo voyage, Jenny’s dog Romeo will join her. He apparently is an excellent companion.

Crowd Funding

Jenny is using crowdfunding such as GoFundMe to prepare for the trip but hopes at some point she will be able to give back by donating to research organizations for CMT.

Jenny’s goal is to increase awareness of CMT. She points out that once people know more about the disease, support will follow. She hopes that people will be inspired by her story and that perhaps there will be a cure in her lifetime. She is thinking of younger people who are hoping for a cure so they can live full, pain-free lives.

Jenny realizes that this is her opportunity to prove that she can reach her goals despite CMT. That anyone can do anything if they put their mind to it.

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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