Name: Kolby Draper
Age: 23
Where do you call home? I live in a small town in central Florida named Bartow.
Education/Degree(s); What is a current goal you have with your education? How will FA add to your future[career]? I currently only have a high school diploma, I went to Welch College in Nashville right after graduating but had a fall which resulted in a knee injury so I had to come home and could not complete any classes there. I have taken a few classes locally when I have been able to. I would love to and maybe one day plan to get a degree in Theology and another in Architecture, combining them to plant churches, build homes, orphanages, schools, and hospitals both locally and abroad. FA is holding me back from that but if (scratch that, when) a cure is found, that's what I want to do long term.
What is your relationship status? Do you have children? Who do you live with? I'm currently single and living with both of my parents, Michael & Tammy (I couldn't ask for any better than them!). I want to have children but I probably wouldn't have the energy to chase them around haha.
What's a typical day for you? I usually wake up and go to sleep pretty late, unless I have a church service/related event, doctor appointment, family/friend/personal event to go to. But in between I study and watch movies/listen to music all day. I'm in the process of writing a commentary so that's where most of my studies go into.
How long have you known you are living with FA? My diagnosis was around 10th grade (genetic and neurologic). I was about 15 so for about 8 years. But, symptoms started earlier, my writing was terrible (has always looked like a 5-year old's writing lol), balance and general clumsiness, energy, migraines, neuropathy and scoliosis (later confirmed to be neuromuscular).
Are there any others living with FA in your family? No, but I do have a cousin with Duchenne Muscular Dystrophy.
Describe your transition from walking to a walker/wheelchair. Describe an adaptation and/or transition you have had to take due to living with FA. I was able to walk all throughout high school (with the exception of 1 semester in 2011 when I had my 1st spinal fusion surgery). I was able to walk across the stage
and get my diploma, which was great! I continued walking with no assistance until I had a fall in college, after that I had to recover but as soon as I was able to grab onto walls and furniture (they were my best friends lol) I began using them until I could stabilize myself again and kept going until about the fall of 2014. In December of 2014, I had the 2nd and 3rd spinal fusion surgeries and the 4th and 5th in 2016. I have been in a wheelchair since the end of 2014 because the pain has been too much to deal with and therapy or just trying to get up and active makes it so much worse.
What do you like to do to stay active and what type of exercises work for you to stay strong? I've had 5 spinal fusion surgeries and am still in severe consistent pain so I'm pretty much bedridden, but if I do enjoy any activity it would be swimming because of the lower stress on the joints and stuff.
Do you have any hobbies or special interests? If you haven't guessed yet I love God's Word, having theological discussions with anyone who wants to. I love playing pool, playing video games, hanging out with friends, I have always enjoyed movies/TV, learning (in all areas but my favorites are history, archaeology, biology, poetry and all things pertaining to math!) and problem-solving: puzzles, mysteries, and riddles. Anything that challenges me (or anyone who may be struggling with something) that I can help to find an answer to. The short version, FA has taken away so much, but the one thing it doesn't
take away is my mind and my heart for helping people, perhaps that's a reason why I try so hard to feed and sharpen both.
What is a good trick to make daily life easier? I don't really have any. Just try to focus on helping other people and of course, prayer is key!
When FA gets you down, what do you think/do to feel better? Earlier on, I would get really down and have 'Why me?" moments but now I am confident in who I am and what I'm able to do, so it doesn't bother me. As I have grown in my faith, God has shown me that He is standing beside me, holding me and guiding me. Ultimately, my body will fail me whether I have this disease or not, but He is my strength, desire, and portion. One day He will receive me to glory, I will be able to do everything I've ever wanted to and give Him the worship. He deserves for all of the blessings I've been given. (Psalms 73:23-26)
What is one way living with FA has POSITIVELY affected your life? FA has taken away a lot from me, but in that, it has given me so much! God's grace is sufficient and His strength is made perfect in my weakness. In any suffering that FA may cause I am never down for the count, which extends far beyond FA to life in general. Hope always remains and no matter the broken state of my body, I can be used. It is much better to be lowly in your mind than to be lifted up in your mind. If I didn't have FA I might trust in myself and my accomplishments/abilities too much and fail. I rejoice now because I don't trust in myself for anything but instead in Christ and in Him there is no failure! (2 Corinthians 12:8-10 & Philippians 3:7-10)
What is a favorite motivational quote of yours? Not as though I had already attained, either were already perfect: but I follow after, if that I may apprehend that for which also I am apprehended of Christ Jesus. Brethren, I count not myself to have apprehended: but this one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before, I press toward the mark for the prize of the high calling of God in Christ Jesus. (Philippians 3:12 14)
What is a piece of advice that someone with FA has given you that encourages and inspires you? There's no quoted advice really, but their drive pushes me! They never give up no matter how hard things get, and I can appreciate that!
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Don't think or let it get in your head that just because many people have not been able to do certain things past a particular stage you have to give up on it on that basis. Every person/case is unique, use that to your advantage! Do everything you can until you can't anymore!
What is the first thing you want to do when a cure/treatment for FA is found? The first thing I would do is go race indoor go-karts.
