As many Patient Worthy readers are aware, Jenny Decker, a Charcot Marie Tooth patient, has made a serious commitment to circumnavigate the globe solo despite an incurable and eventually fatal disease.
In June 2023, Jenny Decker, 40-year-old trauma nurse, began her voyage with a bright and glorious American flag flying off the bow of her 1884 35.5C Bristol named Tiama. Jenny displays Old Glory when she enters foreign ports as a means of identifying Tiama’s country of origin. However, in spite of taking exceptional care, the flag was continually exposed to the elements and shredded beyond repair.
Compared to some of Jenny’s past challenges, such as Tiama being dismasted or being in the path of a waterspout, the flag incident appears insignificant, yet it is vital and needs immediate attention.
On a lighter note, Jenny does have a few locations she is particularly interested in seeing such as Vanuatu near Fiji and Madagascar off the southeastern coast of Africa.
Between retrofitting the boat to accommodate Jenny’s disability and making other necessary modifications, Jenny is truly self-sufficient. That is if anyone can be entirely independent when challenging the ocean and an ever-growing disability.
CMT is inherited. Jenny’s mother was diagnosed with CMT and is currently in a wheelchair. There is no cure yet there are 126,000 people living in the U.S. and 2.6 million people worldwide that have CMT.
Jenny hopes her effort will change that picture and bring awareness to the disease.
