Ashley's Angels

Each quarter, the Atlanta Planning Committee designates a local charity in which we donate our time and money.  This quarter, our charity hit very close to home by the way of one of our own.  One of our employees has a daughter, Ashley, who has been struggling with Muscular Dystrophy since birth.  Her dedication to Ashley is unwavering but has proven too much to bear. 

Ashley is in desperate need of the basic things for independence and survival – a new wheelchair and feeding bags which all have been denied by Medicaide, must be purchased out of pocket.  A wheelchair accessible vehicle would help Ashley to hold on to the freedom and independence we all take for granted.  Her story below is one of a spirit that will not give up or give in.  Please consider any donation will help Ashley to live with dignity and grace.

My name is Ashley. Some people know me as Ashley Wheels. My close friends call me Ash. And to some people, I’m that girl with Muscular Dystrophy. It’s a rare form and I could tell you the exact name, but at 32, I know that it won’t help you understand it any better.

My MD complicates everyday life, making even the smallest tasks a challenge. Which is mostly okay because I like a challenge. If I didn’t, I might have given up a long time ago.

Over time, my MD has created additional health problems throughout my life. Restrictive lung disease, scoliosis and failure to thrive are just a few of the surprises MD has brought into my life. I was 16 when I got my first power wheelchair. The scoliosis surgery (spinal fusion) I needed drained my muscles to the point where I could no longer walk. And now, I struggle to even stand on my own. Recently, I broke my record of standing with assistance for a full 60 seconds! That might not sound like much of an accomplishment, but for me it was kind of a big deal.

Any time I lay down, I have to use a breathing machine called a Trilogy. It helps keep my CO2 and O2 levels normal. I also have a feeding tube that provides me nutritional supplements of 2500 calories over and above whatever I can eat during the day. I’m still underweight at only about 70lbs.

By now, you might be asking, what needs I have that you can help with.

First, I live outside Atlanta, Georgia, in Douglasville. We have no available public transportation available for disabled folks, like me. I get around in my 2007 Dodge Caravan van that’s specially designed for me to drive. It has a ramp, so I can ride my wheelchair up into the car and a special seat that turns so I can get into the driver seat, special easy steering and a key pad that can allow me to select the driving features, such as park, reverse, drive, and to put the lights on, etc. Back in 2007, the price for all that was $73,000. 

All this equipment is nice, but it is falling apart, and the van is now difficult for me to use.  The steering wheel is so hard to move and the door and ramp work intermittently.  Betsy, that's what I named my van, is moody on her best days. I try to be patient with her, but there’s been many times that I can’t get the door to open to get in the van, plus I have gotten stuck inside the van several times too and couldn’t get the door to open to let me out. I had to call 911 for help.

Replacing her parts is very expensive and not guaranteed. But having this small bit of independence is important to me. MD has taken so much— little things and big— and losing my ability to get myself from one doctor’s appointment to another, or even to the grocery store would be devastating.

My van falling apart is just one expense I can’t afford, but there are other things I could use help with. I'm on a fixed, limited income and on Medicare, which leaves me responsible for whatever isn't covered. I've fought to get Medicaid but keep getting denied. I even went to court to appeal their decision. They say I don't qualify. That means no nursing aides to help me. I'm doing it on my own the best I can.

Without additional help, I won’t be able to get the new wheelchair I ordered based on their assurances that it would be covered. They’re covering part of it, but I have to come up with over $4,000 in order for me to receive it. My current wheelchair is running on fumes. Pretty soon, my ability to drive won’t be such a problem if I end up bedridden. And I have too much life left to live for all that craziness.

Being disabled is expensive with a lot of hidden expenses that someone who isn't disabled doesn't have. Things that most people can’t even imagine. It’s a lot to ask for— I know that— but that’s what MD does, it makes basic daily tasks into a big production. I just hope to continue to have the chance to tackle those adventures without fear that tomorrow I won’t have either set of wheels that I rely on.

With your generosity and help, I’ll be able to continue to “dance” in my kitchen, visit my mom without relying on her even more than I already do, and allocate my energy for enjoying the freedoms I still have.

Ashley's YouTube Page: https://www.youtube.com/watch?v=1LlpLXwx5Hk&feature=youtu.be