My name is Jenny Decker and I am setting off on the most beautiful adventure yet. I am aspiring to be the first female, solo sailor with Charcot Marie Tooth disease to circumnavigate the globe. This journey has been a few years in the making but I have finally found the right vessel to guide me; SV Tiama.
Tiama just finished her circumnavigation with prior captain
Dustin Reynolds (https://thesinglehandedsailor.com/). He set a world record as being the first double amputee to solo sail around the world. Our lives collided after both living on the Big Island of Hawaii and me also solo sailing on my previous vessel “Made of the Sea” in the Atlantic. He became a mentor and good friend as we both had a similar dream and outlook on how precious life is due to our disabilities. Although very different, our short comings push us to live life to its fullest with the uncertainty of when we won’t be able to. Dustin proposed “passing the torch” on to me by purchasing Tiama and becoming her next captain. So when he finished his incredible accomplishment, which I was blessed to witness his completion, I purchased and moved aboard Tiama. We have been sailing her around the islands together as Dustin shares his time and knowledge of her. These moments have been truly precious and no words could ever express how grateful I am to him. So here I am, the new captain of SV Tiama, writing this message from Hawaii while preparing her for another lap.
Charcot Marie Tooth (CMT) disease is a hereditary degenerative neurological disease that damages the nerves in the arms and legs. There is no cure and it progresses with time. I was born with it and have slowly experienced it deteriorating my body. I am losing motor and sensory function of my arms and legs. This has lead to coordination issues with walking and being able to complete fine motor skills with my hands. It’s as though my body doesn’t listen to the signals my brain is sending it. Through my disease progression I have found different ways to complete everyday tasks but I know I have an internal stopwatch on how long I will be independent. When I end up in that wheelchair as my mother did, I want to know I lived my able bodied life to the fullest. I have always considered this disease a blessing rather than a disadvantage. It has molded me into the determined, stubborn individual that I am today. If I put my mind and heart into something, there is no other option than to DO IT .
As an ICU nurse, most medical professionals have never even heard of this disease making it even more understandable that non-medical individuals haven’t either. Furthermore, until a few years ago, most of my family and friends never even knew I had it. In 2016, over 20 days in the Pacific Ocean, I became the first solo person to kayak around the Big Island of Hawaii. I did this previous feat to bring awareness for CMT. I also raised over $10,000 for research towards a cure.
Prior to that journey I had never even met another person with CMT besides my mother. It has become a personal goal to continue creating awareness so that we may find a cure, to give an independent, pain free life back to those that have had it stolen by this disease.
I want to continue inspiring those with this ailment, or any disability for that matter. I truly believe you can do anything you put your mind to. So this journey is to inspire all individuals to challenge themselves, set goals, go for them, and share all triumphs or heartaches… it is what makes us feel the most alive as humans and connects us.
Although I was reluctant to start a support platform, I have had a lot of push to do so from those of you that want to emotionally and financially support me as I take on this endeavor. I am so grateful and blessed to be supported and loved in all I do. For that, I send my sincerest gratitude. I cannot wait to share “Just a Lap” with you.
With all my love and determination,