BEFORE & AFTER
PROJECT TIMELINE
Q & A with SARAH SANCHEZ
Describe your diagnosis and the physical limitations you experience.
I was diagnosed with Spinal Muscular Atrophy type 2 (mostly referred to as SMA II) at the age of 18 months. A biopsy was performed on a piece of muscle from my right thigh. I was able to walk with the help of leg braces (AFOs) and a walker until I was about 4 years old, but as goes with my disease, the progression soon took that away and I moved to my first manual wheelchair. I decided on hot pink as the color because I loved Barbies as a kid, and the color pink and Barbie are synonymous. This wheelchair did not last long at all, as I soon lost the ability to push myself around. By the next year, I had my first power wheelchair. The immense feeling of freedom that I got was amazing. My disease progression didn’t halt, but I went years being able to do most of the things that I wanted to do, just had to go about it differently. My disease progression started ramping up again around the time I was 16 years old and steadily progressed to the point that I now can wiggle my feet a little, my fingers on my left hand can also give a wiggle, and I can lift my right hand from wrist to the tips of my fingers off of the table.
Describe the difficulty of your current living situation and how Stairs2Chairs can improve that.
My current living situation needs dire repairs that have been let go far longer than is deemed safe. The mobile home that I live in with my dad is almost 50 years old. Things are starting to give like dominoes and we are trying our best to fix things and stay afloat at the same time. First, it was our old van needing to be replaced, then the ramp to the entry of our trailer, followed by the roof leaking heavily in many areas so that also needed to be repaired, and now we are dealing with the original particle board subflooring getting wet in areas, becoming unstable and mushy. The direst location that this is happening is around the toilet in the only bathroom that I have access to. When I was made aware of how bad the situation was I called local nonprofits and flooring companies without any luck, as no one wants to work on a mobile home, let alone one as old as ours. Stairs2Chairs can help me stay in my home and use the bathroom without fear, as we already have enough issues regarding that subject as is!
Describe the physical and mental challenges that you incur due to this situation.
I dread having to use the bathroom and go as little as possible. I suffer from anxiety as is and this problem has exacerbated it tenfold. You should not be afraid to go to the bathroom and I am. Every time that I am being placed on the toilet, I inwardly cringe and say a little prayer that the wheel of the Hoyer lift doesn’t hit a really soft spot and go through the floor, bringing me along for the ride.
Describe the safety concerns that this project will address.
This project will help us fix one of a handful of soft places throughout the main living area that I reside in. This area is the most important one to fix, as I am in danger every time I go to the restroom. With this project, the toilet will no longer be a death trap video game where it can pull the floor out from under you…literally.
How will this project impact your independence?
This project will allow me to stay in my home, which is a huge deal because it is the only place in this world where I feel safe. I can just be myself without the harsh looks and judgments that I get when I do have to wander away from home.
Describe the impact that this project will have on your family and/or those that care for you.
The impact will be tremendous, yet never spoken about. I will no longer see the quick scared glances or the fear in their eyes that they are trying not to show. This whole situation and life in general has been extremely hard on my family and the stress this will release from us all will be immeasurable and appreciated beyond words from my entire family and care team.
Describe your experience working with Stairs2Chairs so far.
Weston has been so very helpful and easy to work with. His willingness to help me when I reached out amazed me, as they hadn’t even set up contacts here in Minnesota yet. That says a lot about his character and Stairs2Chairs' mission of wanting to help those who are disabled.
In what ways can Stairs2Chairs make a larger impact on those living with physical disabilities?
The impact Stairs2Chairs can have on the disability community is limited only by the imagination.
What do you want others to know about the differences you experience in your everyday life?
I want everyone to sit in a chair with a high back. Place your arms and hands in a comfortable position either on the armrests or on your lap. Place your feet firmly on the ground. Now I want you to let your body go limp, don’t go overboard and slip off of the chair like I would. You can turn your head side to side, wiggle your feet and toes, wiggle all but your pinky on your left hand, lift your right hand up to the wrist, and wiggle and bend your fingers except for your thumb. That is everything that you can do physically. Now sit there and don’t move. Sit for however long it takes for an itch, the urge to move to arise, or you become hungry or thirsty. You could simply scratch the itch, but imagine that you are physically limited like I am. You can’t help yourself and no one is around to help you scratch that pesky annoying itch that just won’t go away. You sit and suffer in silence until the urge to scratch goes away. ...and that is the everyday difference between you and me.