Ethan Kohler, has Friedreich’s Ataxia, it is a neuro-muscular disorder that causes:
loss of coordination (ataxia) in the arms and legs
fatigue – energy deprivation and muscle loss
vision impairment, hearing loss, and slurred speech
aggressive scoliosis (curvature of the spine)
diabetes mellitus (insulin – dependent, in most cases)
serious heart conditions, including hypertrophic cardiomyopathy and arrhythmias
But Ethan does not let that stop him from doing what he wants. Ethan can be seen riding four wheelers, driving boats and now……. Paddleboarding, yes I said paddleboarding.
A few months back I set up a little beach party at the Keokuk Yacht Club in Keokuk Iowa on the Mississippi River, I wanted to bring up my paddleboards and teach some of the members how to SUP. This was not the whole reason I came up. I also wanted to bring up Shane Perrins 2016 MR340, 4 man paddleboard and I wanted to put Ethan on it and let him paddle with his brother and some friends. After talking to Jessica ” Ethans Mom” she agreed to see if he would want to try it. I think she got a pretty quick yes from Ethan. So we decided to try it. I drove to Columbia Missouri where Greystoke “The Board” was being stored. Our friend Cami helped me load the 110lb board on to the roof of my truck and off I went.
So let me tell you, when you have something like this, a one of a kind type of paddleboard on the roof of your van, people look at you funny as you drive down the road. And when I say can virtually get ANYONE up on a paddleboard, “don’t challenge me” because I will bring out the big guns. This was a challenge I gave to myself and once again Greystoke and Shane Perrin beat me. I knew the board could hold 4 people and gear, I knew Greystoke was stable and you can walk around on it but never in my life would I have thought I could put a young man in a wheelchair and his friends and family on the same board. Greystoke once again fulfilled another dream. The first dream was for Shane to build a board like no one had ever seen “CHECK”, Second was to get his two good friends Jerico LaFort and Dale Sanders down the Missouri river to the finish line of the MR340, the worlds longest non stop paddling race. His third dream was to someday see it affect other people’s lives and on August 18th, 2018 his third dream came true. We set a camp chair on the front of the board, I secured it with some cord, “we did not want to use his expensive wheelchair” Ed “Ethans Father” helped him sit in the seat and BOOM, Ethan was sitting on a paddleboard for the first time. It did not take long for his little brother Aiden to join him for a little paddle. As Aiden and Ethan came back to the dock some family friends were waiting to try this thing out. So on they went, about a half mile north to a lily field and back. As the came back I yelled out our picture quote “PADDLES UP” and they all instantly turned into a paddleboard full of goofy, smiling paddleboarders.
After seeing Ethan on Greystoke something happened to me. I knew when I opened Show Me SUP I wanted to own my own business, but I also wanted to make a change, put smiles on faces and step outside the boundaries a little bit. Shane not only changed my life, he gave me the direction I wanted to go with my life. He does not really know that but it’s the truth. To some people, stand up paddleboarding is just another fun sport that can get them on the water, give them a work-out and have a little fun. To others, it is a lifestyle and a way of life. My everyday life revolves around Stand Up Paddleboarding and paddling in general, this is the path that was meant for me, it’s what I wanted to do with my life. SUP also gives me a platform to maybe change some other people’s lives just like mine was changed. I don’t think I changed Ethan’s life by any means but, I did get to see a young man do something he might not have thought he could ever do, hell, he may not have known about it before I brought it up to Jess, but when he came to the Yacht Club that day it was, Hey!, let’s go. When I said earlier that Ethan does not let anything hold him back, I meant it. Until I talked to Jess about FA, I never knew what it was. So, FA affects 1 in 50,000 People, that makes FA very rare, and after seeing the smile on Ethan’s face, looking at his mom and dad and the smiles they had I knew this was the other path I wanted to take with my life, and use Stand Up Paddleboarding to take me there. I want to help this organization, I want to give them another activity the can use to help bring FA into the front lines of research for a cure or treatment. Even if it’s locally, I want to do what I can for FARA.