Fund Fackler
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My name is John Fackler. I was diagnosed with Spinal Muscular Atrophy (Type III ) when I was 15 years old. I am now 39 years old. I have worked full time since I was 18 years old. I would like to continue to work full time and support myself financially. However, because of my ever-worsening condition, this working full time is beginning to have obstacles that won’t be overcome without your help. I am asking for your help in obtaining a Bounder power chair and a wheelchair conversion van.
My Life Now
I have lived an independent life. I would love to get back to it. Right now, however, I live with my parents because living without round-the-clock physical assistance is impossible. Over the last 3-5 years, my condition has plummeted. After a lifetime of fairly predictable decline with a still somewhat manageable disability, I now find myself unable to do many things on my own if at all. Walking is becoming more and more difficult. I use a cane, and I walk slowly and carefully—because a fall could be catastrophic. I don’t walk far. I try to avoid going anywhere. Walking up even the slightest incline has become dangerous, and I usually need assistance if I must do so. Walking up a curb is impossible. Going up stairs can be done with a railing, depending on the stairs, and depending on the railing. I try to avoid them. Going down stairs is frightening, and is never done without assistance from someone else. Don’t get me started on what it’s like during snow and ice season. Sitting isn’t too hard, though it can get tiring for long periods. Standing from a sitting position has become very difficult and is often times impossible. I often need help, especially after a full day of work due to the increased level of fatigue. I sleep in my parent’s living room because I can’t go up the stairs to my old bedroom. I am no longer able to get out of bed by myself. When it’s time to get up in the morning or the middle of the night, I have to have my parent’s help. In the evenings and on my days off, I sit at a desk because I can’t get up from a couch or chair. This desk is where I do everything. Reading, eating, watching movies—you name it. I’m at the desk all Saturday and Sunday so I can have the energy to go to work Monday through Friday. I don’t go out, I don’t see friends, and I don’t do things, ever. When it’s time to get up from the desk for dinner or to go to bed, I call my mom from my cell phone so she can come help me up. I do this every day now. I used to live alone. I am coming up on three years living with my parents at the end of July, 2015.
Do I want you to feel bad for me? Heck no. Read on.
Insurance doesn’t pay for everything. You probably know this yourself firsthand. In fact, insurance hasn’t even begun to pay for anything at this point because the bureaucratic gears grind very slowly. I am getting started EARLY with this GoFundMe because I know that I will need to. I need the chair now, my doctor wants me to have the chair now, but I must wait. Insurance will pay for some of the chair. The number “80%” has been mentioned. But the type of power chair that I need runs somewhere around $30,000. My 20% at that point would be around $6,000. (These are very conservative estimates) Not horrible, if my insurance pays their portion. But getting the chair to and from work, and the grocery store, and the laundry, and everywhere else that people go is going to require a van with a ramp that I can drive from my chair. These wheelchair conversion vans run between $30,000 and $60,000. The van I’m currently looking at costs $42,619. (It’s red!) This is for a USED van with wheelchair conversion. Mind-blowing, right? I thought so, too.
My Life With Your Help
First of all, I can continue WORKING. I like working. I don’t want to be on disability. I love the freedom that having a job allows me. You most likely know what I mean. But in my power chair and a wheelchair conversion van, I will be able to leave my house without assistance. I can go out into the world confidently. I can live my LIFE. Something I am not doing now. Not at the level I want to be, at least. I can see my friends and be involved in their lives on a regular basis, instead of maybe once a year. I can have an apartment again. I can enjoy going outside instead of treating outside as an inbetween zone. I can go to the grocery store. I can go to the kitchen by myself and make a sandwich. This list goes on and on.
Please help me accomplish this with whatever you can afford. No amount is too small. No amount is too large. It is all very much appreciated and needed. Every cent I receive will go towards the power chair and the wheelchair conversion van. The amount that I posted will most-likely be adjusted as it becomes more clear what I will need financially. If through immense generosity I receive more than my goal amount, that money will be applied to my accessibility needs in the near future and beyond.
Thank you for reading this, for sharing this, and for helping me.
John Fackler
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