Support a Young TD's Journey with Needed Adaptive Equipment

My name is Raven, I am 23, and I just graduated from the University of Illinois in Urbana-Champaign with a degree in Scenic Technology. For those of you not familiar, think of it like a combination of project management, engineering, drafting, and safety planning for live entertainment. It's a unique and small field, but I love the hands-on work and getting to keep people safe while making magic.

I have one dog named Finn, whom I adore. I also have a cat named Hemmer, named after an engineer in Star Trek, a deep love of mine. I have had a revolving door of special needs animals come through my life. All are welcome here, even if they break my heart along the way. I am an animal lover through and through. I also have a little sister who came into my life at the ripe age of 20 after a messy biological family situation. I have been a parent ever since, and while it has been hard, I have adored her every moment. She has made me a better person and forced me to grow in wonderful and beautiful ways. I love to build furniture and tinker with things in my free time. I have an eclectic taste in alternative music that I got from my adoptive (i.e., my real) dad. I love to sit under the stars late at night, explore forests, go kayaking, and wade through lakes and beaches with Finn.

And alongside all these things that make up me is the fact that I am also a wheelchair user. No, I am not paralyzed. I have an ultra-rare genetic neurodegenerative disorder that is ultimately terminal. It has no name; I am one of a kind. The only one with my genetic mutation.

Here is what we do know: the neurons in my central nervous system (your brain and spinal cord) are slowly deteriorating. This means I have trouble with coordination, balance, movement, sensation, and even controlling my heart rate and blood pressure. It makes my body twitch, jerk, and tremble, among other things. In addition, this disease impacts my muscles, both the ones on the outside you use to move and the ones in your organs, like your GI tract and bladder. So I have muscle weakness across my body, making everyday things exhausting. This is why I use a wheelchair, I wouldn’t be able to access the world or the job I love without one. The muscles in my GI tract are also impacted and very weak. My large intestine had to be removed two years ago because it completely stopped working. The rest isn't much better. Because my body struggles so much to absorb nutrition and digest food, I am reliant on a feeding tube to get the nutrition I need.

Finally, this disease impacts the connective tissue in my body, the glue that holds you together. So my joints come out of place, my skin tears very easily, I don't heal well, and the vessels that circulate blood around my body like to spontaneously combust. It also causes heart problems for me and degenerative spinal disease, which brings pain.

All of these things are progressive and will continue to decline until the disease kills me. Because I am the only one of my kind, we don’t know when, but we anticipate not past 40. Life with this disease is far from easy, but it is the only one I was given, so I have decided I will make the best of it.

See, at only 19, I was handed this life-changing diagnosis, and my life turned upside down. My career and my sense of identity gone. My options were to give up and wallow or to come to terms with the fact that this disease will kill me. Likely far sooner than I would like. But just because the story is going to end in a way I hadn’t foreseen, doesn't mean there aren't so many pages to write in between. People think living with a terminal disease is all despair. But I am going to let you in on a secret: life may be hard with a terminal disease. But my god, is it beautiful. We are all dying, some just faster than others. And knowing that my time is shorter has made me jump into the deep end of life. I am in a race against time and I am determined to do everything I want to do before the end comes, this disease be damned. I know I won't win this battle, but this disease can lose. It can lose by refusing to let it take my spirit. This disease will take my ability to move, it will take my ability to feel, it will take my ability to control my body, it will take my ability to eat. But it will not take my soul, my grit, my passion, or my joy. This is my story, and I get to write every sentence except the end.

It's why I chose scenic technology and technical direction. Because I wanted to do it. And maybe the field wasn't made for a body like mine, but I wasn't going to let that stop me. So I dove in head first to the deep end. We adapted every step of the way. It may not be traditional, but there is nothing others can do that I can't do. I use a table saw, chop saw, drill press, and pretty much any tool you can think of. I can weld (actually better than any student in my class), drive a genie, and work a fly rail. I've gotten to the grid and the pit. I have been both an assistant technical director and technical director on multiple productions. Some things take me more time. Sometimes it looks like securing a chair into a genie, adding grips to drills, adding ropes to tall handles, or sitting on the floor to get more leverage. But there is always a way to adapt.

I have flown across the country to speak at conferences, been OSHA certified (10 and 30), been CPR certified, learned AutoCAD, been an automation operator, operated chain hoists, led complex truss loadouts, was on the winning team of a design competition at Purdue, and then the next year was team lead for the winning team of the same design competition. All while dealing with the complex health needs that come with this disease. Life looks different than it might for you, but it has been amazing. At 19, I thought my life was ending, but when I learned to accept the end, I began leaning into life, and the story actually began.

And now a new chapter of the story is beginning, but I need your help to write it. I have graduated and will be moving on to a position in a new city. Unfortunately, my body decided this past year and a half was a great time to have some rather aggressive neurological deterioration. I have had the wheelchair you see in the pictures for the last six years, and it has served me well. But it no longer serves my needs, not to mention it's falling apart after the beating I have put it through in the shop. I can no longer self-propel over long distances or up hills because of my worsening muscle weakness. I have trouble balancing without side supports, I am getting pressure sores because my cushion wasn't made for people with reduced sensation, and I have significant pain in my spine because of how my body is positioned. It has also gotten to the point where it is extremely difficult for me to get my chair in and out of my non-adapted car by myself because of the weakness and balance loss.

What I need is a power chair and an adaptive car. But here is the problem, insurance won't cover either. We submitted for a power chair, and it was denied. 3 times. We exhausted all of our appeals. A power chair is $50,000 plus. Then with a power chair comes the need for an adaptive car, which your traditional adaptive minivan is around $90,000 (price tag of minivan and then $40-50,000 to modify). Together, the price tag of $140,000 is just unattainable as a freshly out-of-college young adult.

After much consideration, we have settled on a new manual chair with special seating to help me balance and reduce my pain, with power assist wheels to help me self-propel. It’s not perfect, but better than what I have. Insurance still won't cover it, but the price tag is around $11,000, which is more attainable. As for the car situation, I have found a used adapted minivan for $12,000. Its old but in good condition and has the ramp and swivel seat I need to be able to transfer in the car. This is the most affordable option I have found and while not perfect it will serve the need. A new adaptive van is around $90,000. So this brings the number down to a total of $23,000. Still a scary number for a fresh college student but much more attainable than $140,000.

I knew this day was coming very soon when I needed these tools, but the timeline quickly accelerated when I got into a car accident on the way to an appointment. In short, a very small car turned in front of me when I had a green light. I was driving a very large SUV, and I would have flipped the car if I had t-boned them. So I sacrificed my car to save them. This accelerated the timetable considerably. I am now in desperate need of an adaptive car ASAP. I will be moving soon and need the vehicle more than ever for my upcoming jobs.

That is how I ended up here, asking for your help. An adaptive vehicle and a new chair are critical to my success and upcoming life. I cannot write the next chapter without both of them, but I don't have the resources to pay for something so large. So, I am asking for your help investing in my future, in my story. I am attempting to raise $23,000 to cover the cost of the car at $12,000 and the chair at $11,000. Any amount helps, even just spreading my story. I am grateful for any and all support in this journey. This isn't just a donation. It's a piece of the puzzle that will help me continue to do the things I love. To let me write the story I want, not one dictated by my body because insurance doesn't think it's "medically necessary." To let me do the job I love, the way I want, for as long as I can. Your help means getting to keep the race against the clock going. Your help means that this disease doesn't get to win because I still get to keep writing this story the way I want. And that is a gift I will never be able to repay. Thank you for helping me turn the page!